About

2018 FAACT Partners

image of Eleanor Garrow-Holding President & Chief Executive Officer

Eleanor Garrow-Holding
President & Chief Executive Officer

Eleanor Garrow-Holding has worked, educated, and advocated in the food allergy community for 14 years. She was inspired to start this work after her son, Thomas, was diagnosed with life-threatening food allergies to tree nuts, peanut, wheat, and sesame; eosinophilic esophagitis (EoE) triggered by milk and wheat; asthma; and environmental allergies. In December 2015, Thomas had a food challenge with wheat and passed. He is no longer IgE-allergic to wheat. After a 3-month trial with wheat and another 3-month trial with milk (post wheat) in his diet and upper endoscopies, he has also outgrown the wheat and milk triggers for EoE and is in remission from EoE as of July 2016. 

As CEO of the Food Allergy & Anaphylaxis Connection Team (FAACT), Eleanor provides leadership, development, and implementation for all of FAACT’s initiatives and programs, including Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Eleanor founded in 2009. Eleanor has a Bachelor of Healthcare Administration degree from Lewis University in Romeoville, IL, and worked in hospital management for 16 years in Chicago and suburban Chicago prior to working in the nonprofit sector.

After Thomas was diagnosed in 2004, Eleanor established a food allergy support group in a southwest Chicago suburb, Parents of Children Having Allergies (POCHA) of Will County, focusing on education and advocacy; chaired the FAAN Walk for Food Allergy in Chicago in 2007 and 2008; was awarded the FAAN Muriel C. Furlong Award for Community Service in 2008; and advocated in the Illinois state legislature on food allergy and Eosinophilic Disorders (EGID, EoE) issues. Thanks to the efforts of Eleanor and other patient advocates, legislation to ensure insurance coverage for elemental formulas was signed into law in 2007 and legislation establishing food allergy management guidelines for Illinois schools was signed into law in 2009.

Eleanor joined the Food Allergy & Anaphylaxis Network™ (FAAN) in 2009 as Vice President of Education and Outreach, where she oversaw educational initiatives, all food allergy conferences, the Teen Summit, Camp TAG (The Allergy Gang), a Teen Advisory Group, support group development, and more. She advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) in Washington, DC, with her son Thomas as part of FAAN’s Kids Congress on Capitol Hill. She also advocated on Capitol Hill for the School Access to Emergency Epinephrine Act. Eleanor served on the Center for Disease Control's (CDC) expert panel for the "Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs". Eleanor has also conducted numerous radio, television, and print interviews on food allergy issues and wrote articles for Allergic Living and Living Without magazines. She continues to present at national and regional conferences about food allergy management in school and restaurant settings and educates personnel in schools and school districts across the country on food allergy management in schools. Eleanor has also educated staff from numerous food industry companies and entertainment venues about food allergies, such as McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.

In 2013, Eleanor joined the Cincinnati Center for Eosinophilic Disorders (CCED) as Senior Specialist of Program Management at Cincinnati Children’s Hospital and Medical Center for one year. There she led day-to-day clinical operations, clinical research projects, program development, marketing, and development.

Now, leading the charge at FAACT, Eleanor and the FAACT Leadership Team will provide the education, advocacy, awareness, and grassroots outreach needed for the food allergy community. Eleanor serves on the DBV Technologies Peanut Allergy Patient Advisory Board, the National Peanut Board's Allergy Education Advisory Council, Sea World's Allergy Resource Team, and Association of Food and Drug Officials (AFDO) Food Allergen Control Committee. In August 2015, Eleanor was inducted into The National Association of Professional Women's (NAPW) VIP Professional of the Year Circle for her commitment to healthcare and nonprofit industries. FAACT is The Voice of Food Allergy Awareness!

Personal Connections to Food Allergies and Anaphylaxis

Eleanor Garrow-Holding
President & Chief Executive Officer

In 2004, when my son Thomas was 19 months old, he had his first anaphylactic reaction to pecans at a family birthday party. Just one bite and about 30 seconds is all it took for Thomas to have an anaphylactic reaction. He had hives from head to toe, swollen lips, eyes swollen shut, coughing, and shortness of breath. There were no antihistamines or epinephrine in the house. My mother is a nurse and I worked in hospital management. We knew immediately that Thomas was having an allergic reaction.

We drove Thomas straight to the emergency room in the suburban Chicago town we were visiting. It was seven minutes from that one bite to the ER entrance, and Thomas was unrecognizable to me. He was so swollen and disfigured that I could not tell he was my son. The ER team was waiting outside for us as we pulled up, and they immediately took Thomas from my arms. They administered three doses of epinephrine, antihistamines, prednisone, and oxygen. He was hooked up to heart and lung machines. It was almost three hours before Thomas started to look himself again. He was admitted to the Pediatric Unit for observation through the night and to make sure he didn’t have a biphasic reaction.

We followed up with our pediatrician the next afternoon after we were discharged from the hospital, then we scheduled an appointment with a board-certified allergist at Children’s Memorial (now Lurie Children’s) in Chicago for testing and diagnosis. Thomas was diagnosed with food allergies to all tree nuts, peanut, and sesame.

At the time, I had no knowledge about food allergies or anaphylaxis, nor did I ever know anyone with food allergies. I was determined to learn everything I could to keep Thomas safe and to educate myself, my family, and our friends. I started a support group in the suburb where we lived and provided education and outreach, advocated for state legislation for School Food Allergy Management Guidelines and Insurance Coverage for Elemental Formulas, and raised funds for food allergy and anaphylaxis education and research.

When Thomas turned three, he was diagnosed with asthma and environmental allergies. When he turned four, he was diagnosed with Eosinophilic Esophagitis (EoE) triggered by milk and wheat. Thomas later developed an IgE-mediated food allergy to wheat after reintroducing it back into his diet due to the EoE. I knew I wanted to do more on the national level, and in 2009 I was offered the Vice President of Education position at the Food Allergy & Anaphylaxis Network.

In January 2013, I realized my journey to educate, advocate, and raise awareness was not complete and formed the Food Allergy & Anaphylaxis Connection Team (FAACT). FAACT is for every person affected by food allergies and anaphylaxis because we are all connected, and we all work together as a team to educate and advocate. My goal is for FAACT to provide you with everything you need for your family to be healthy and safe. 


Amelia G. Smith, JD
Vice President of Civil Rights Advocacy

Within hours of my son being born, he was projectile vomiting. The first five months of his life consisted of a string of trips to the pediatrician’s office with diagnoses of reflux and failure to thrive and prescriptions for every possible combination of every reflux medication on the market.  At six months old, Robert saw a pediatric gastroenterologist at Le Bonheur Children’s Hospital in Memphis, Tennessee who, after hearing Robert’s medical history, took one look at my son and his weeping eczema and suspected food allergies were at the root of Robert’s condition. I was told that in nursing my exclusively-breastfed baby, there was a possibility he was allergic to trace amounts of food allergens in my breast milk. We left that day with a referral to a board-certified allergist, a prescription for elemental formula, and instructions to eliminate the top eight food allergens from my diet before nursing my baby again. Once we were finally able to see the allergist, Robert was skin-prick tested for the top eight allergens. The wheal from the egg scratch was so large that the other results were unreadable. Through RAST testing, Robert was also diagnosed with peanut, tree nut, and shellfish allergies. My world was turned upside down with this diagnosis. At that time, the only thing I knew about food allergies was their life-threatening nature. I became consumed with educating myself about food allergies. Over the next few months I learned that my lactation consultant’s child had food allergies as did one of my daughter’s classmates. Fast friendships and a food allergy support and education organization, Food Allergic Children’s Education (FACE IT), were born. As the founder of FACE IT, I became active as an advocate at the local and national level. Robert had his first anaphylactic reaction at the age of two while at his day school, where I had just trained the staff two days prior. After this reaction, it became obvious that special accommodations were going to have to be put into place in try to prevent future reactions. As Robert made his way through a private, church-controlled day school and prepared to enter public school, I faced many of the same challenges other food allergy family face making sure that my child was appropriately accommodated to ensure that he was safe once I dropped him off every morning. My goal at FAACT is to help educate families regarding the different options and possible accommodations available to them in such settings.


Betsy Rinehart, MSN, RN, BSN
Vice President of Education & Outreach

My son Edward was born in 2006 and soon developed moderate eczema that doctors said was just the result of delicate newborn skin. Edward was a happy baby but had "silent reflux" – a lot of regurgitation but no obvious signs of discomfort. Doctors assured us that as Edward grew, his ailments would decrease.

When Edward was 13 months old, I gave him some of my dinner – a pesto pasta salad that I was unaware contained walnuts. He immediately started fussing, which I dismissed. When I finally looked over at him, Edward was covered in hives everywhere he had contact with the pesto pasta salad. With my background in healthcare, I immediately knew he was having an allergic reaction. I panicked, called a neighbor for help, and thankfully, Edward's reaction did not progress beyond the skin symptoms. Subsequent testing revealed Edward to be allergic to peanuts and tree nuts.

We visited a few doctors in Dallas until we found an allergist with whom we felt comfortable, and we continued to test Edward for further allergies. We navigated schools as Edward started preschool in Dallas and then continued after a move to Kentucky. Through our moves, I was exposed to vast differences in how allergists educated us about Edward's allergies. In 2012, after we moved to Colorado, Edward was further diagnosed with allergy to sesame seeds. Together with our wonderful team of allergists, we have been able to hold "supervised feedings" at Children's Hospital in Denver, during which we have proven that Edward is not allergic to the wide variety of tree nuts to which we once thought he was allergic.

I have been able to understand the medical aspects of food allergies, but I have found it much harder to prepare for the emotional toll that being an advocate for a child with food allergies can take. While I have found a wonderful network of committed professionals here in Colorado on our Poudre School District Food Allergy Task Force, changes still need to be made in many school districts. We consider ourselves lucky that our school is taking steps to help caregivers and students, but we still have a long way to go before children with food allergies can be accepted and cared for in the safest way possible. Together with FAACT, I hope to be able to bring to more people an awareness of the severity of food allergies and the necessity of proper procedures to keep known – as well as undiagnosed – allergic students safe.


Lisa Rutter
Director of Support Group Development

I started my journey with food allergies when my son, Evan, had his first reaction at the age of 12 months. At the time, we didn’t understand food allergies or know what was going on. Evan had one little lick of some peanut butter ice cream and immediately developed a rash around his mouth. I reported this to our pediatrician, and he advised us to hold off on giving our son peanut butter until he was three or four years old.

Throughout the next couple of years Evan continued to have odd occurrences such as random projectile vomit and swollen eyes. All of these incidents were dismissed by our pediatrician as being “nothing,” and this left my family to just speculate that it was some type of illness or bug bites causing the swollen eyes. When Evan was two and a half years old, we relocated to Michigan. We had friends over to our new place for the first time. I decided to make peanut butter and jelly sandwiches for his playmates and just a jelly sandwich for Evan. So I made everyone’s sandwiches and then I rinsed and wiped clean the knife to cut Evan’s sandwich in half. Shortly after lunch, his eye was swollen so badly that he reminded me of the character in the movie “Rocky.” I flushed it with water and gave him Benadryl. I couldn’t figure out why this was happening again. Thankfully, the reaction went away.  Around that same time, we were grocery shopping and Evan was given a peanut butter cookie from the bakery counter. He took a tiny bite, spit it out, and complained he didn’t like it. I then asked the bakery for a plain sugar cookie instead. Evan’s mood quickly declined and he became very cranky and agitated. I then took him into the bathroom and he started crying and then vomited everywhere. At the time, I thought he was just getting sick.

In March 2011, my son went in for testing at his allergist’s office. He was tested for peanut, tree nuts, pet allergies, and environmental allergies. My son was diagnosed with environmental allergies and severe food allergies to peanuts and tree nuts. This was a wake-up call for our family, and I immediately learned as much as I could about food allergies. Looking back now, I feel so ignorant, but I really was when it came to food allergies. If people around us would have been more knowledgeable about food allergies, we could have prevented so many close calls with my son’s life.

As FAACT’s Director of Support Group Development, I plan to work on support group development because education and support are so important for food-allergic families. I want to continue to raise awareness and spread food allergy education to everyone around us.


Stacey Stratton, M.Ed.
Publications Manager 

I was there the day my sister first gave my nephew a peanut butter cracker when he was around 18 months old. He was very small on the growth chart, and the pediatrician felt the protein in peanut butter would help him increase in weight.

Soon after he ate the cracker, my sister had left the room and I continued sitting there by my nephew. He had his back to me, but he kept rubbing his face and I could tell something was causing him distress. I went to pick him up, and he had hives all over his face. I yelled for my sister, and when she saw him, she quickly grabbed the phone. The nurse kept asking her questions, and since I was holding him, she would then ask them to me. Then she asked, “Are his lips getting bigger?”

I knew I needed to stay calm for her. This was a situation where it would be easy to start to panic. Yes, I said, they were starting to get bigger. The ambulance was called and within minutes you could hear the sirens getting closer.

Before that day, neither one of us had any knowledge of food allergies. After I started learning about food allergies and also seeing the struggles that parents of food-allergic children went through, I knew I wanted to help. My goal is to help spread the word about FAACT and the services they offer to support food allergy families and provide food allergy education.

S. Shahzad Mustafa, MD

S. Shahzad Mustafa, MD
FAACT Medical Advisory Board Chair

Allergist, Division of Allergy & Immunology
Rochester Regional Health System
Rochester, NY

Clinical Assistant Professor of Medicine and
Clerkship Director, Allergy & Clinical Immunology
University of Rochester School of Medicine and Dentistry
Rochester, NY

We are pleased to announce Dr. Shahzad Mustafa as FAACT’s Medical Advisory Board Chair, which will be a three-year term from 2016-2019. After growing up in the Rochester, New York area, Dr. Mustafa pursued his undergraduate studies at the Johns Hopkins University in Baltimore and attended medical school at SUNY Buffalo. He then completed his internal medicine training at the University of Colorado and stayed in Denver to complete his fellowship training in allergy and clinical immunology at the University of Colorado, National Jewish Health, and Children’s Hospital of Denver.
 
While in Denver, Dr. Mustafa was involved in research on peanut allergy and new therapies for asthma. Dr. Mustafa is a member of the AAAAI adverse reactions to foods committee as well as the AAAAI mast cell disorders committee. He was also a co-chair on the AAAAI sub-committee on influenza vaccination in egg-allergic individuals.
 
He sees patients out of the
Rochester Regional Health System and is heavily involved with the allergy/immunology training program at the University of Rochester, where he is Clinical Assistant Professor of Medicine. He is also the clerkship director for the allergy/clinical immunology elective at the University of Rochester School of Medicine and Dentistry.
 
Outside of work, Dr. Mustafa is married and has three children, including one child with allergies to peanuts and tree nuts. In addition to spending time with his family, his interests include traveling, photography, and playing squash.

National Gold Sponsor

Jo Frost FAACT National Spokesperson

Jo Frost
FAACT National Spokesperson

Jo Frost to help raise awareness of life-threatening food allergies
that affect more than 15 million Americans, including 6 million children

Global parenting expert, bestselling author, and television personality Jo Frost has been in our living rooms for more than 15 years on television shows including “Supernanny,” “Family Matters,” “Family S.O.S.,” “Extreme Parental Guidance,” and her newest show, “Jo Frost: Nanny on Tour.” Her six books on parenting – the most recent of which is Jo Frost’s Toddler Rules – have become go-to guides for childrearing, and her no-nonsense approach has helped millions of families across the world bring harmony back to their lives.

Jo has always had a natural gift for connecting with kids on their own levels and connecting with parents and children organically. With more than 20 years of childcare experience, beginning as an actual nanny, she has honed her successful methods of childrearing with hands-on, real-life experience.

She also knows first-hand the life-threatening nature of food allergies: Jo is allergic to peanuts, tree nuts, and shellfish. Now she is now bringing her childhood development experience and international celebrity to help children with food allergies.

“We are honored and grateful to have Jo Frost join the FAACT family as our National Spokesperson and advocate for all individuals with life-threatening food allergies and anaphylaxis,” says FAACT President and CEO Eleanor Garrow-Holding. “Jo’s voice will be instrumental in educating children, adolescents, and adults about food allergies. We are excited to have Jo be a part of our programs and to work with her for many years to come!”

“As an advocate for those who live with life threatening allergies, it is an honor to be an ambassador for a leading charity such as the Food Allergy & Anaphylaxis Connection Team (FAACT). They do fantastic work on behalf of anaphylaxis, and together we will build awareness for those with food allergies in the way of advocacy and education. Together we will continue to make advances in the issues affecting those of us with life threatening allergies. It takes dedication, commitment and more than a village to educate those that don’t live with this medical condition. Now we need to pull together as a community and bring awareness to those that are less informed giving those of us with anaphylaxis inclusion and equality.

I feel very passionate about this cause, educating people on the issues of health and safety surrounding anaphylaxis, which includes food labeling, knowing proper actions to take, airline travel, schools and public venues having correct training and diagnosis. All of this is of vital importance that could save lives and would not create an imposition to the general population. Simple changes can make a huge impact to children and adults living with anaphylaxis on a daily basis. It is my goal to see America continue to stand alongside other countries on this health condition.”

In addition to numerous awards in the United Kingdom, Jo was nominated for a People’s Choice Award and in 2006 received an International Emmy Award nomination. You can read more about Jo’s new television show, speaking engagements, and more on her Web site: www.JoFrost.com. And stay tuned here for the FAACTs on Jo’s work with the Food Allergy & Anaphylaxis Connection Team.

http://www.nationalpeanutboard.com/nutrition/understanding-food-allergies/

The National Peanut Board supports FAACT's mission-based education and advocacy programs, outreach initiatives via webinars, FAACT's Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend.

Amelia Smith Murphree, JD Vice President of Civil Rights Advocacy

Amelia G. Smith, JD
Vice President of Civil Rights Advocacy

Amelia G. Smith, a native of Tupelo, Mississippi, practiced law in a variety of areas as a managing member of Pipkin & Murphree, PLLC before joining McLaurin Law Offices, pllc. Amelia received her B.A. in English from Mississippi University for Women and her Juris Doctor from the University of Mississippi, where she concentrated on civil rights and employment discrimination.

After her son, Robert, was diagnosed with food allergies, Amelia founded Food Allergic Children’s Education in Tupelo (“FACE IT”), the only support and education organization for families with food allergies in Mississippi at the time. Once she learned about the challenges students and families with food allergies face in childcare centers and schools, Amelia developed an interest in special education law. She is a 2012 graduate of William & Mary School of Law’s Institute of Special Education Advocacy. Amelia is admitted to the Bars of the State of Mississippi, the United States District Courts for the Northern and Southern Districts of Mississippi, and the United States Court of Appeals for the Fifth Circuit. She is a member of the Mississippi Bar Association, Lee County Bar Association, and Lee County Young Lawyers Association.

As a member of the FAACT Leadership Team, Amelia’s focus will be on Civil Rights Advocacy, advocating for food-allergic individuals’ rights to safely and equally participate in activities alongside their non-allergic peers.

Todd Mahr, MD

Todd Mahr, MD

Gundersen Lutheran Medical Center
La Crosse, WI
Clinical Professor, Department of Pediatrics
University of Wisconsin School of Medicine and Public Health
Madison, WI

2018 President-elect of the American College of Allergy, Asthma & Immunology 

National Silver Sponsors

Betsy Rinehart, MSN, RN, BSN Vice President of Education & Outreach

Betsy Rinehart, MSN, RN, BSN
Vice President of Education & Outreach

Betsy Rinehart was born and raised in New Orleans and attended the University of Virginia, where she received a Bachelor of Arts in Government. Betsy worked for Congressman Billy Tauzin (Louisiana) on Capitol Hill before moving to a lobbying firm in Virginia. In 2002, Betsy left politics to follow her lifelong interest in healthcare. She attended the University of Maryland and received her Bachelor of Science degree in Nursing in 2003 and her Master's in Nursing in 2004, after which she worked as a family nurse practitioner.

When Betsy's son was 13 months old, he was diagnosed with allergies to peanuts, tree nuts, and seeds. Although Betsy understood the mechanics of food allergies due to her background in nursing and healthcare, she soon discovered that the world of food allergies had many layers. Betsy became a local advocate for her son at preschools and child care centers, educating about avoidance, emergency preparedness, and the emotional effects of food allergies on children, families, and caregivers. Often, Edward was the first child with severe food allergies at his schools.

In 2012, after moving to Colorado, Betsy became involved with the Poudre School District Food Allergy Task Force, a group of local stakeholders and district employees who prepare comprehensive school guidelines for the entire school district. The group also works on educational programs in conjunction with schools and seeks to support parents, students, and school employees who deal with food allergies. In June 2014, Betsy became a co-leader of the longstanding local support and resource group, I-CAN (Inspiring Children with Allergies Network).

Betsy has seen first-hand the difficulties that can arise in working with schools and caregivers who have not yet experienced food allergies. As FAACT’s Vice President of Education & Outreach, Betsy will oversee food allergy education in schools, support group development, and many other education initiatives. Betsy is committed to bringing more education on the issues that accompany food allergies to our families, communities, and schools.

Frank Dicopoulos FAACT Celebrity Spokesperson

Frank Dicopoulos
FAACT Celebrity Spokesperson

Actor Frank Dicopoulos knows first-hand about the seriousness of food allergies and the challenges of managing them on a daily basis. Best known for his 22 years on the long-running daytime drama The Guiding Light, Frank is allergic to shrimp. So are his wife and daughter.

“I had my first food allergy [reaction] on a date when I first met my wife,” Frank says, describing the symptoms that occurred after he ate some shrimp. “Years later, my wife and daughter had the same reaction to shrimp! It's terrifying watching a loved one going through [a] reaction.”

Now the entire Dicopoulos family engages in safe food allergy practices, avoiding their allergens and carrying their medications with them wherever they go. Given his personal experience, Frank can relate to the anxiety shared by the millions of Americans affected by food allergies. “I honestly believe that educating and bringing awareness to the public of this epidemic is a strong start,” he says.

As a spokesperson for FAACT, Frank will be a featured speaker at FAACT events, as well as our education and outreach activities. He firmly believes that his visibility as an actor provides him with an opportunity to get the message out about this potentially life-threatening medical condition because “this is a cause that has hit very close to home.”

https://www.facebook.com/DBVTechnologies/

DBV Technologies supports all of FAACT's mission-based education, advocacy, and awareness initiatives, including Camp TAG (The Allergy Gang), Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend.

Carol D'Agnese Board Chairperson

Carol D'Agnese
Board Chairperson

Carol D’Agnese’s eldest son was diagnosed with multiple food allergies when he was just 11 months old. At the time, food allergy was not on her radar, but it quickly became her focus as she researched everything she could find about the condition.

Four years later, she had so much information gathered that she thought it would be a shame not to share it. So in 2006, using her extensive business experience in social media, digital marketing, public relations, strategic brand positioning, and product marketing, she founded the San Diego Food Allergy Support Group. This all-volunteer group offers meetings, educational seminars, and a Web site with links to the latest news and information about food allergy for adults and parents of food-allergic children.

An enthusiastic marketer with extensive experience in social media, digital marketing, public relations, strategic brand positioning, product marketing, digital media communications, driving brand loyalty and increasing shareholder value.
Carol has worked with rapid-growth businesses, public, pre-IPO, non-profit, privately held firms, and international partnerships in several industries including customer goods, medical devices, catalog/online retail, Internet software, food allergy management and advocacy, and real estate.

Kenton Duty FAACT Celebrity Spokesperson

Kenton Duty
FAACT Celebrity Spokesperson

Born and raised in Plano, Texas, Kenton Duty discovered his love for acting in the fourth grade when he landed supporting roles in Dallas Theater Center’s musical rendition of A Christmas Carol. He also discovered early on that he was allergic to chocolate, wheat, and dairy.

As Kenton navigated the maze of the entertainment industry, he also learned to navigate school, acting, and travel with food allergies. Kenton says he outgrew his dairy allergy but still has to plan ahead to avoid wheat and chocolate. He brings his own bagels and breads to film sets and restaurants. He also travels with his own food, either taking it on the plane or shipping it.

Kenton always carries his own auto-injectable epinephrine (“I really like to think that it is just another item I carry around like my phone, iPad, sunglasses,” he said in an interview) and advocated on Capitol Hill for the School Access to Emergency Epinephrine Act, which was signed into law in 2013.

Kenton is also vocal about the issue of bullying. He played one of the lead characters in the 2013 movie “Contest,” which premiered on Cartoon Network as part of the network’s anti-bullying initiative. Although Kenton played the bully in this movie, he is all too familiar with being on the other end. He was bullied when he was younger because of his food allergies and says he is still subject to peer pressure today.

Kenton plans to attend college to double-major in film production and finance. Recently he wrapped production on the indie films “Little Savages” and “Mickey Matson and the Pirates Code.” His television credits include the Disney Channel series “Shake It Up”and a recurring role on the last season of the ABC series “Lost.” Kenton volunteers as frequently as his schedule allows, especially in the areas of children’s health and advocacy. As part of the FAACT team, Kenton will speak at FAACT national and teen conferences and help develop teen education programs, particularly anti-bullying programs.

http://enjoylifefoods.com/

Enjoy Life Foods supports FAACT's education and peer programs, including Camp TAG (The Allergy Gang), Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend. Enjoy Life Foods also provides In-Kind donations for all of our programs.

Lisa Rutter Director of Support Group Development

Lisa Rutter
Director of Support Group Development

Lisa is a native of Ohio who currently lives in Michigan with her husband and two sons. Lisa has been managing food allergies since 2011, when her oldest son was diagnosed with a peanut and tree nut allergy at the age of three years old. Lisa knows first-hand how isolating and overwhelming it can be when you first get a food allergy diagnosis, and she is dedicated to supporting, educating, and connecting other people living with food allergies. Lisa is the Founder of a food allergy group called No Nuts Moms Group and Co-Leader of a local support group called FACES of Michigan. Her passions are her family and educating others about food allergies.

When Lisa’s son was diagnosed with life-threatening food allergies to peanuts and tree nuts, she learned as much as she could to educate herself and everyone around her about food allergies. She soon realized that going on play dates with other kids was going to be challenging and searched everywhere for a food allergy group offering play dates for moms and children with food allergies. Lisa’s search ended in a dead end, so she decided to start her own group for food-allergic families looking to meet and connect with others in the area. The word about No Nuts Moms Group quickly spread, and requests for local groups in the United States and Canada came rolling in. Lisa gave other moms a chance to start their own local groups, and now No Nuts Moms Group is internationally known for supporting and connecting people with food allergies. When Lisa started the group, she had no idea about the impact she would make in the food allergy community. Lisa has helped thousands of families across the country. 

Lisa has set up educational food allergy booths at local schools and other venues in Michigan. By doing so, she has reached out to other families that didn’t have access to epinephrine for their children and didn’t understand the seriousness of food allergies and anaphylaxis. She also plans food-free events for food-allergic families, such as Halloween and Easter events. Lisa was also instrumental in getting the Stock Epinephrine Bill passed into law in Michigan.

As FAACT’s Director of Support Group Development, Lisa will manage support group development throughout the country, as well as FAACT's education initiatives for the school setting and more. She will also continue to educate and raise awareness for those living with food allergies and anaphylaxis.

The Life – and Death – of Giovanni Cipriano

The Life – and Death – of Giovanni Cipriano (Age 14)

As told by his mother, Georgina Cornago

Giovanni was born a happy, healthy baby. I breast-fed him for a little over a year. At around 7 months, we decided to also supplement with formula since it seemed that he wasn’t as satisfied as he used to be with breast milk alone. Finding the right formula was definitely a challenge. He seemed to be allergic to many of the formulas, with reactions including reflux, loose stool, rashes, and what we eventually realized was eczema (for which we were given steroid creams and antihistamines to help with the itching). He developed asthma very early on as well.

As Giovanni grew older, we slowly began to introduce other foods. He loved to eat. I introduced new foods carefully. I would notice some foods gave him red cheeks or reflux and made him cranky, but I didn’t realize these were allergic reactions.

Food Allergies Diagnosed

When Giovanni was around 18 months old, I made chicken with a peanut sauce. After one bite, Giovanni began to get hives, his eyes swelled, he had a runny nose – not the reactions I had seen before. I called our pediatrician, who told me to give Giovanni a dose of antihistamine and bring him in. Once there, our pediatrician said Giovanni must be allergic to peanuts and advised me to keep an eye on him and to give him antihistamine as directed. His symptoms did not get any worse that day, and we left with a referral to an allergist.

After going to the allergist, Giovanni was diagnosed with allergy to peanuts, eggs, cats, dogs, mold, and hay fever. I remember the nurse giving me a prescription for antihistamines and an epinephrine auto-injector and showing me how to use it in case of an emergency. I wasn’t given a food allergy management plan. I don’t remember there being any sense of this as a life-or-death situation – just a diagnosis, prescriptions, and the recommendation that we follow up with our pediatrician.

So from then on, that is what I did. Giovanni’s pediatrician was his “go to” doctor for everything. When we asked about seeing a specialist, our pediatrician stated that he would treat Giovanni first.

Giovanni had a few allergic reactions to peanuts – one from someone giving him a cracker when he was very young and the other was after eating a piece of cake at my husband’s work Christmas party that they reassured him did not have nuts in it, when in fact it did. We never thought these reactions were severe. He would usually vomit, get some hives, and have a bit of scratchy or tingly throat. After a dose of antihistamine, symptoms seemed to calm down and go away on their own. Thinking back, these reactions would be considered anaphylaxis, and were severe.

I followed up with the pediatrician, who said I should give Giovanni antihistamine since his reactions were mild, and he should be okay. We were never told that epinephrine must be used for certain symptoms, only that it could be used if we really thought he needed it. But, since he never had a bad reaction, I didn’t think he needed it.  That was the extent of our anaphylaxis management planning.

A Severe Reaction

On October 1, 2013, Giovanni and I were settling in early, happy that homework was finally done early, dinner and chores were done, and we were going to be able to enjoy movie night together – just him and me – for the first time in a while since school had started. Giovanni had just started at Holy Trinity High School, so homework, studying, and sports left little time for relaxing and leisure. We popped the movie in and had our snacks ready. One was a snack mix of mini cookies, pretzels, almonds, and M&M’s. I usually always bypass the full food label and go right to the bottom of the ingredients where they usually have an allergy disclaimer. I had read the back of the bag, and all I saw was “MAY CONTAIN TREE NUTS.” Good, I thought, he is not allergic to tree nuts.

I gave Giovanni a few pieces of snack mix from the bag, but within seconds he was saying, “Oh no, there are peanuts in here!” I said he was wrong and read the ingredients again. Although there was no “peanut” disclaimer, it did actually have peanuts as a main ingredient. I just didn’t read enough! I don’t know how in the world I didn’t see it.

I immediately gave Giovanni a regular dose of antihistamine and said we should go to Premier Care, the after-hours clinic, just to be safe. Then I gave him a second dose of antihistamine just as back up. Giovanni was only feeling a little scratchiness in his throat and was giving me a hard time about getting dressed to go to clinic.

At this point, I should have called 9-1-1.

I said let’s go now, just to be safe. The epinephrine auto-injector was on the table right next to my purse, and Giovanni asked if he should use it. I said I didn’t think we needed to, that we should just get to the doctor. I threw all the meds into my bag and left. On the way out, Giovanni asked if he should vomit, since that is usually what happened in the past. I said if you need to then try, but he couldn’t.

Premier Care is about a seven-minute car ride away. Giovanni was still talking on the drive there. He had his inhaler with him and used it a few times. I kept telling him not be nervous, that he was going to be okay. We got to the office, and it had JUST closed. No one answered the door. Giovanni began to panic. We jumped back in the car and immediately started to look for the epinephrine auto-injector. We couldn’t find it.

At this point, he was still okay. He was still talking, just more scared now. I still was thinking we were okay. Now I had to drive to the emergency room, which was about another seven minutes away. All I could do was focus on getting there without crashing, I was beeping my horn and had my hazard lights on, taking every red light I could safely run and reassuring him every minute that he was going to be okay, that we were almost there, to just hold on another minute.

We were around the corner from the hospital when Giovanni must have felt something serious, and he said, “I can’t mom, I don’t want to die.” I was yelling, “No! No! That’s not going to happen. We’re here. Just hold on. I’m there in two seconds.” He didn’t respond.

I turned down the street to the emergency room and realized he was quiet. I grabbed his hand and said we’re here, but I realized he was cold. I looked at him, and he was blue. I started screaming and beeping as I drove to the emergency room entrance. There were people outside and I was screaming, “Help, my son has peanut allergy. He passed out. I need to get him inside!” They all ran over, and I remember about five of us struggling to get him out of the car. At the same time, emergency room staff came running out with a wheelchair, and we threw him in it. I was just screaming, “Help him, please! He is having an anaphylactic reaction to peanuts.”

Staff were running through hallway, yelling “We need a table now!” as I ran behind screaming “Please, help him!” That was the longest hallway ever. Then these nurses stopped me and took me into a small room while they took Giovanni away, and I had to wait and wait and wait. I had called my husband when we were leaving the house and told him what was happening and that Giovanni was okay. Now I had to call and tell him to get to the ER right away.

It was nearly an hour later when a doctor came out to brief us. She told me how they worked on Giovanni for quite a while, that his heart had stopped and that he had been without oxygen for about 3 minutes, but that they were able to save him. They told me he was on a respirator. I was finally able to see him. He was unconscious and needed to be transported to a pediatric ICU.

Giovanni was in a medically induced coma for several days in hopes of alleviating the trauma caused to his brain from lack of oxygen, but he got worse when they tried to bring him out of the coma. Doctors re-induced him into the coma in hopes that he would recover. But after three weeks of exhausting all measures to try to save him – after many hopes and prayers – Giovanni’s body just couldn’t sustain the injury to his brain, and he passed away on October 18.

I am grateful that I was able to hold my little boy in his bed, along with his dad and his sister, and was surrounded by every one of his closest family members, every one of them holding hands, holding each other up, while he crossed over to finally be in peace.

Lessons Learned

Giovanni was always a happy little boy. There was always a smile on his face. Giovanni was running from the time he woke up to the time he went to sleep. And even when he was sleeping he was still a restless sleeper. He was a star athlete. He was a best friend. He was the best brother. He was my little boy, my little man. He took care of me, and I took care of him. He was my friend, my partner. He was the reason I did EVERYTHING I did. He was his dad’s pride and joy. His dad is lost without him. He was an honor student. He knew to be helpful, to be of service, to be respectful. He knew how to seize the day and run with it.

Giovanni’s loss is felt not just here in our family, in our community, but all over the country. Giovanni’s loss is awful, it is heart wrenching, it doesn’t make sense. If it has taught us one thing, it is that we know we don’t want anyone to ever have to feel the pain that we feel.

We want to help educate and advocate for all families living with food allergies. We want everyone to know that food allergies are serious. Some people think it’s not that big of a deal, that food allergy parents tend to overreact, and for the simple and lucky reason it hasn’t yet affected them. How many more lives need to be lost to prove it is a big deal?

Food allergies can mean life or death. In the past two months, it has become apparent just how true that statement is. Two more little lives have been taken in our community due to a peanut allergy. More people need to be informed about the dangers of food allergy, including healthcare professionals and parents. If you have a food allergic child, seek consultation with a board certified allergist who has expertise in food allergy. Allergist evaluation and periodic routine follow up are recommended steps in the NIH food allergy guidelines for caring for food allergic children. It is important to do your own research and be your own advocate. Find the very best doctor you can, and even if he’s a little farther away, it may be worth it to go those extra miles.  If you advocate for your child and do the research, it is possible that you may be able to help your doctor form the best treatment plan possible for your child. If you are not happy with the treatment or feedback, then find a new doctor. Do not settle!  If you reach a point where you are not comfortable with just your primary care physician managing your child’s food allergy, then you have to have a frank discussion with this provider about your desire to involve a food allergy expert in the care. 

The most important information we want everyone to know is that when there are signs or symptoms of anaphylaxis, administer your epinephrine auto-injector (such as an Auvi-Q or Epi-Pen). This is the first line of treatment for anaphylaxis! Always have your epinephrine auto-injectors available. It is wise to have two doses available because some people may need a second dose. Do not hesitate to use this when it is needed! It can save a life. Epinephrine use has virtually no downsides or bad side effects beyond increasing the heart rate and blood pressure, and possibly causing some temporary bruising and pain where the device was injected. Most importantly, make sure you have a written anaphylaxis management plan provided by whomever is managing your child’s food allergy. This must be reviewed until you know it like the back of your hand, and you are comfortable with the steps. The physician creating this plan must be able to clearly explain to you what symptoms require antihistamine, and what other ones can only be treated with epinephrine.  It is your responsibility to master this plan, and be ready to act should the need arise.

If you should have to treat your child with epinephrine, call 9-1-1! Call your local ambulance service and tell them that a child is having an allergic reaction and may need more epinephrine. (An ambulance should be called not because epinephrine is dangerous but because the allergic reaction could be severe, needed to be treated with epinephrine, and may require more treatment).  Even if you are unsure if your child needs the epinephrine, don’t hesitate. Don’t let fear take over. It won’t harm your child if it turns out not to be needed, but it will harm your child if you don’t use it, and it was needed!

Together, we can prevent other lives from being lost. One death is too many! Please join me in supporting FAACT today!

Kendall Renee FAACT Teen Ambassador

Kendall Renee
FAACT Ambassador

Kendall Renee knows about food allergies all too well. She is anaphylactic to 95 percent of all foods and must use a feeding tube in her stomach to receive nutrition. She is also severely allergic to airborne particles of all nuts. Kendall carries auto-injectable epinephrine with her at all times – and has used it to save her life eight times to date.

None of this has stopped Kendall from pursuing her dreams. She is a very active competitive figure skater, singer/songwriter, water skier, and wake boarder. She is also a very active food allergy awareness advocate, working to educate the public about food allergies.

As FAACT’s Ambassador, Kendall presents and is a teen leader at FAACT’s Teen Retreat and helps develop FAACT’s teen-focused educational programs.

“I believe that food allergies should never get in the way of living your life to the fullest and accomplishing your dreams,” Kendall says.  Her motto is to “Believe Fearlessly!”

To learn more about me, visit www.kendallreneemusic.com.

National Bronze Sponsors

Stacey Stratton, M.Ed. Director of Publications

Stacey Stratton, M.Ed.
Director of Publications

Stacey Stratton has a Bachelor of Arts in Communications and a Master’s degree in Education from the University of Akron. She has eight years of experience working as an Intervention Specialist for children with special needs, and for the past four years she’s been helping children with food allergies. She is using her education and experience to help families communicate and educate about their child’s food allergies.

Two of Stacey’s nephews have life-threatening peanut allergies. Years after they were diagnosed, Stacey started PeanutFreeZone.com to help educate others on food allergy safety and provide products to help increase awareness.

Using her previous experience working in schools, Stacey wrote “Allergies at School” to help guide parents and schools in working together to increase safety. She has also assisted families by participating at several food allergy events throughout her community.

As FAACT’s Director of Publications, Stacey will manage our publications and other communications and contribute to FAACT’s social media outreach. Stacey is committed to educating and advocating for all individuals and families affected by food allergies and anaphylaxis, which will include many education initiatives.

Katie Allen, MD  Theme Director Population Health

Katie Allen, MD 
Theme Director Population Health  

Group leader Gastro & Food Allergy  
Murdoch Children's Research Institute  
Royal Children's Hospital
Victoria, Australia

Kaléo supports FAACT's education and awareness initiatives as well as our peer programs, which includes Camp TAG (The Allergy Gang), Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend.

Joseph Baumert, PhD

Joseph Baumert, PhD

Associate Professor and Co-Director
Food Allergy Research & Resource Program (FARRP)  
University of Nebraska-Lincoln
Lincoln, NE

Alison Cassin, MS, RD, LD

Alison Cassin, MS, RD, LD

Pediatric Dietitian
Cincinnati Center for Eosinophilic Disorders (CCED)
Division of Allergy & Immunology
Cincinnati Children's Hospital Medical Center
Cincinnati, OH

http://mylan.com/

Mylan supports FAACT's education and peer programs, which includes Camp TAG (The Allergy Gang), Leadership Summit, and Teen Retreat Weekend.

Raquel Durban, MS, RD, CSP, LDN

Raquel Durban, MS, RD, CSP, LDN

Pediatric Dietitian
Asthma & Allergy Specialists, PA
Charlotte, NC

National Contributor Sponsors

Jeff Duty Board Vice Chairperson

Jeff Duty
Board Vice Chairperson

Born and raised in Texas, Jeffrey has had food allergies since he was an infant, which in that day and age was a difficult diagnosis. Jeffrey is allergic to several food items including wheat, dairy, alcoholic beverages, and chocolate. Jeffrey has enjoyed working with Food Allergy and Anaphylaxis Network (FAAN) on several initiatives prior to joining FAACT’s Board of Directors. Jeffrey's son, Kenton, also has food allergies.

Duty has been a business consulting executive for 24 years. He has consulted in many industries. Duty has also worked with all sizes of companies. He has worked in one-person start-ups to Fortune 100 companies. Duty has been accountable for understanding his clients’ business initiatives and challenges and strategically building the appropriate team to deliver the work products to achieve those initiatives and challenges. He has been responsible for also aligning the technological development and incorporating the business strategy enabling his clients to shape their company and be a leader in their industry.

Duty has previously worked as a Business Executive Consultant at IBM, responsible for development and execution of multiple consulting organizations. He has also previously worked as a Business and Information Technology Consultant at Dun & Bradstreet Corporation. He holds a bachelor of business administration degree from University of North Texas. Duty is committed to educating and raising awareness for food allergies and anaphylaxis, and is looking forward to furthering FAACT's mission. 

Zac Chelini FAACT Spokesperson

Zac Chelini
FAACT Spokesperson

Zac Chelini is a national spokesperson for FAACT. He is known to be a curious mind and is on track to be a life-long learner. Zac grew up with a severe allergy to peanuts after being diagnosed when he was 5 years old. At the time, the education, advocacy, and policy in place to provide a safe and respectful learning environment was decentralized and before social media. Therefore, his family and family friends have pioneered some of the regulations that have now become Nevada state law to advocate and protect students with food allergies. He began his advocacy journey in a local support group known as AAPE in his hometown of Reno, NV. This is where he learned of and cultivated his voice to share his story. Over the next decade, Zac began speaking more frequently where he has spoken on the national stage to advocate for food allergy education. He speaks at FAACT’s national events, such as our Leadership Summit and Teen Retreat where he leads the teen sessions throughout the weekend. Zac is also a national spokesperson for Kaleo’s “No Appetite for Bullying” campaign aimed at raising awareness and rising up against bullying in the food allergy community.

He currently lives in Reno, NV and is attending the University of Nevada, Reno receiving his Master’s in Business Administration (MBA) in May 2018. He holds a degree in Engineering Management (’16) from Gonzaga University in Spokane, WA where he was actively involved on campus as an Outdoor Adventure Guide, special recreation volunteer, and campus Ambassador. Zac studied abroad in Zambia, Africa where he prepared, managed and successfully travelled with a food allergy in developing nations.

For more information, please visit Zac’s website at http://www.zacharychelini.com, where he blogs about his experiences, both personally and professionally.

Aimmune supports FAACT's Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend.

David M. Fleischer, MD  Director, Food Challenge Unit, Division of Allergy

David M. Fleischer, MD 
Director, Food Challenge Unit, Division of Allergy

Associate Professor of Pediatrics
Children's Hospital Colorado
University of Colorado Denver School of Medicine
Denver, CO

 

 

Genentech

Genentech supports FAACT's Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend.

Elizabeth Hamilton-Guarino FAACT Celebrity Spokesperson

Elizabeth Hamilton-Guarino
FAACT Celebrity Spokesperson

Elizabeth Hamilton-Guarino, Hay House author and Best Ever You Network CEO, lives her daily life with allergies to peanuts, tree nuts, fish, and shellfish. In 1998, Elizabeth nearly lost her life due to an allergic reaction to almonds. In 1999, she had a second near-fatal allergic reaction while pregnant with her third son, after which she was hospitalized for more than a week.

Elizabeth turned these challenges into a mission to help people living with allergies thrive and be their very best. She founded the Best Ever You Network, which is a leading multimedia provider of lifestyle and self-help content. With Brian Hom, she co-founded the Food Allergy Zone to find a cure and the cause of food allergies. Elizabeth hosts “The Best Ever You Show” on BlogTalkRadio, which has over one million global listeners. 

Now she adds “author” to her resume. In Percolate: Let Your Best Self Filter Through (April 2014), Elizabeth empowers readers to implement powerful, positive change to thrive in every aspect of your life.  

Elizabeth has a degree in communications and broadcasting and also works as a life coach. She lives with her husband and four boys in Maine. Visit BestEverYou.com for more information about Elizabeth’s work and passions.

https://www.neocate.com/

Nutricia North America supports FAACT's Camp TAG (The Allergy Gang) program, Leadership Summit, and Teen Retreat Weekend.

Friends of FAACT Sponsors

Christina Fanning Board Treasurer

Christina Fanning
Board Treasurer

Chris Fanning is Vice President of Finance with the Jane Goodall Institute (JGI), a 501(c)3 organization with international operations, where she is responsible for all finance, accounting, audit, and information technology functions.  

Chris brings to the FAACT Board of Directors more than 25 years of finance, accounting, and operational experience. She holds a BBA with a concentration in Accounting and an MBA. Her C-level experience spans more than 15 years in a variety of business structures, including private for-profit companies, government contractors, and not-for-profit organizations. For the past six years, her focus has been solely in the not-for-profit sector, including five years in the voluntary health charity space, where she served as the Chief Financial Officer for The Food Allergy & Anaphylaxis Network™ (FAAN) in Fairfax, Virginia, overseeing all finance, accounting, technology, human resources, and administrative functions. Chris is a wonderful advocate for the food allergy community and has spent time at many food allergy events, getting to know the families. Chris is committed to fulfilling FAACT’s mission and helping to raise awareness for food allergies and life-threatening anaphylaxis and to ensuring FAACT has the resources to succeed well into the future.

Luke Pilgrim FAACT Celebrity Spokesperson

Luke Pilgrim
FAACT Celebrity Spokesperson

Singer-songwriter Luke Pilgrim is a prime example of a public figure affected by food allergies, and he has not let the challenges related to this medical condition stop him from accomplishing his dreams.

Luke was 17 months old when he was diagnosed with a severe peanut allergy. Awareness has saved Luke’s life on more than one occasion, and he continues to spread the word on the importance of food allergy awareness, education, and research. He also hopes that through his music, he can inspire and educate people who are affected by food allergies as well as the general public.

Luke has become one of the most watched young artists to emerge out of Georgia in years. Building a reputation as a singer, songwriter, producer, painter, and film maker, Luke has become what many describe as the “full package.” His love of music began at an early age while growing up in Cleveland, a small town in north Georgia. He began sitting in with bands at clubs as an 11-year-old kid, leaving older musicians in awe as he ripped out lead guitar riffs from music greats Stevie Ray Vaughn and Eric Clapton. By the age of 15, he had completed writing, recording, and producing his first full-length album with the band Last November. Last November, with Pilgrim as front man, toured the United States for the better part of a decade.

In 2011, Luke returned to the legendary Southern Tracks Studios in Atlanta to record his first solo album, working with lifelong friend and mentor Rodney Mills (whose musical resume includes Lynyrd Skynyrd, 38 Special, and ARS). The song ”Sweet Tea” from those sessions received play on hundreds of stations nationwide, reaching the Top 40 on Nashville’s Music Row Chart.

In 2012, Luke took time off from touring and re-enrolled in film school – a passion that has been obvious in the many music videos he has directed and edited. While finishing film school in 2013, he released a new single and video entitled “Goin’ Home.” Pilgrim shared these thoughts about the song: ”I wrote this song when my grandmother passed away, so it’s very close to my heart. I’d like to dedicate this release to her memory, but it’s also for you guys. For anyone out there who has lost someone they love. It’s about moving past that hollow, empty pain inside and filling it with the love and joyful memories of our loved ones. This is a tribute to everyone who has made the journey back home before us.”

With songs spinning nationwide on hundreds of radio stations and music videos streaming in more than 5,000 outlets, Luke Pilgrim has proven that although he is affected by potentially life-threatening food allergies, he can manage them and inspire all people affected by food allergies nationwide and abroad.

Luke Pilgrim's Official Website

Luke Pilgrim's Facebook Page

Luke Pilgrim's YouTube Channel

Email Luke Pilgrim

MARS Wrigley Corporation supports FAACT's Food Industry & Research Summit and food industry initiatives including education and awareness for their consumer relations and customer service divisions.

Nima Sensor supports FAACT's mission-based education programs, including Camp TAG (The Allergy Gang), Food Industry & Research Summit, Leadership Summit, and Teen Retreat Weekend.

OWYN supports FAACT's Camp TAG (The Allergy Gang), Leadership Summit, and Teen Retreat Weekend. OWYN also provides In-Kind donations for these programs.

Sara Shannon Board Secretary

Sara Shannon
Board Secretary

Sara Shannon is an active member of the North American allergy/asthma community. Sara’s daughter Sabrina Anne was born on May 29, 1990. When Sabrina was diagnosed with multiple food allergies and asthma, Sara became an advocate and educator on behalf of her daughter.

When Sabrina was nine years old, her mother encouraged her to produce a radio documentary, “A Nutty Tale,” about her food allergies for the Canadian Broadcasting Corporation (CBC). At the time, Sabrina was the youngest producer at CBC, and the radio documentary she made brought her story to national attention.

Tragically, Sabrina suffered a fatal anaphylactic reaction at age 13 during her first year of high school. Sabrina died at Children’s Hospital of Eastern Ontario (CHEO) in Ottawa on September 30, 2003. When Sabrina was dying, Sara held her hand and made a promise to her that she’d do everything possible to prevent a similar tragedy from happening to another child’s family. Sara immediately sent a letter requesting an investigation. One year later, the first press conference regarding anaphylaxis was held at CHEO in Ottawa. Dr. McCallum, the hospitals supervising coroner at the time, recommended sweeping changes to anaphylaxis management in Ontario schools due to Sabrina’s avoidable death.

In 2005, Sara testified to the Ontario Government Standing Committee regarding her daughter Sabrina’s life and death. Inspired by her life and memory, Sabrina's parents and other members of the allergy community have kept her spirit alive by advocating for safer school communities and raising allergy awareness across Canada. Their efforts resulted in passage of “Sabrina’s Law” in Ontario, a landmark piece of legislation that continues to influence school board policies across the country.

CNN’s Chief Medical Correspondent Dr. Sanjay Gupta received the Clarion award for his report, "Sabrina’s Law,” which aired in May 2005. Dr. Gupta travelled to Pembroke and interviewed Sara Shannon as well as Sabrina’s friends and teachers.

Sara has received numerous awards for her advocacy work, including the Upper Ottawa Valley Citizen of the Year, the “Daniel P. Moynihan Public Awareness Award” from the Food Allergy Initiative, the North West Food Allergy Initiative Award for Recognition of Commitment to Food Allergy Advocacy, an “Allergies in Courage” award in Dallas, Texas, and numerous awards of recognition from Anaphylaxis Canada, including the 2011 National Volunteer Award.

A documentary produced by Lank/Beach Productions, Merit Motion Pictures, and The National Film Board of Canada called “Sabrina’s Law” profiles Sabrina Shannon as a young food allergy advocate who died at age 13 and documents Sara Shannon’s journey in keeping a promise to her daughter. “Sabrina’s Law” is highly recommended viewing for educators.

For a decade, Sara has been a featured speaker at annual national walks sponsored by Allergy Asthma and Information Association to raise money for the Canadian Society of Allergy and Clinical Immunology. On September 30, 2012, Sara was moved at the FAAN Walk for Food Allergy in Chicago when the participants blew bubbles in memory of Sabrina.

In 2012, Sara contributed to an allergen research project, “Exploring Social Exclusion among Youth with anaphylaxis,” conducted by the University of Waterloo and University of Toronto. The paper was published and Sara presented a section at a conference.

Sara also travels often to raise awareness about anaphylaxis and life-threatening food allergies. She is also working to keep her daughter’s memory alive. Sara’s hope is that there will be a cure for anaphylaxis. Sara knows the importance of education, knowledge, and awareness. Sara would like “Sabrina’s Law” or laws like it to be passed in all places.

PerfectlyFree® supports FAACT's Camp TAG (The Allergy Gang), Leadership Summit, and Teen Retreat. Perfectly Free also provides In-Kind donations for all of our programs.

Brett Greenberger, MD

Brett Greenberger, MD 
Owner, Collaborative Counseling Center

Columbia, MD

Publix Super Markets Charities support FAACT's Food Industry & Research Summit and food industry initiatives including education and awareness programs.

Simon Hogan, PhD Director of Research, Division of Allergy and Immunology

Simon Hogan, PhD
Director of Research, Division of Allergy and Immunology

Director of Admissions, Immunobiology Graduate Program
Associate Professor, UC Department of Pediatrics
Division of Allergy and Immunology
Cincinnati Children's Hospital Medical Center
University of Cincinnati College of Medicine
Cincinnati, OH

www.sunbutter.com

SunButter® supports FAACT's mission-based education programs, including Camp TAG (The Allergy Gang) and Leadership Summit. SunButter also provides In-Kind donations for all of our programs.

John Lee, MD  Director, Food Allergy Program

John Lee, MD 
Director, Food Allergy Program

Co-Director, Eosinophilic Gastrointestinal Disease (EGID) Program Instructor in Pediatrics
Boston Children’s Hospital
Harvard Medical School
Boston, MA

Eleanor Garrow-Holding Chief Executive Officer/President and Founder

Eleanor Garrow-Holding
Chief Executive Officer/President and Founder

Eleanor Garrow-Holding has worked, educated, and advocated in the food allergy community for almost 10 years. She was inspired to start this work after her son, Thomas, was diagnosed with life-threatening food allergies to tree nuts, peanuts, wheat, and sesame; eosinophilic esophagitis (EoE) triggered by milk and wheat; asthma; and environmental allergies.

As CEO of the Food Allergy & Anaphylaxis Connection Team (FAACT), Eleanor provides leadership, development, and implementation for all of FAACT’s initiatives and programs, including Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Eleanor founded in 2009. Eleanor has a Bachelor of Healthcare Administration degree from Lewis University in Romeoville, IL, and worked in hospital management for 15 years in Chicago and suburban Chicago prior to working in the nonprofit sector.

Read more under "Meet the Team"

Vermont Nut Free Chocolates supports Camp TAG (The Allergy Gang) and our Teen Retreat. Vermont Nut Free Chocolates also provides In-Kind donations for all of our programs.

Food Industry Partners

Andrew Eisenberg

Andrew Eisenberg

Andrew Eisenberg is a business leader with more than three decades of successful experiences with mature and early-stage companies. He has built his career solving problems and scaling businesses in the health and wellness, technology, consumer product, and entertainment markets.

He was most recently President of Awearables, LLC (DBA AllerMates). Having joined the company in its infancy, he built it to become one of the best known and fastest growing brands in the children’s health and wellness market. While there, he dramatically expanded sales channels and product lines, negotiated marketing and licensing agreements with top pharmaceutical and allergen-safe food companies, and created one of the largest online education and community destinations for parents of kids with allergies. He is pleased to have created a safer environment for, and helped to educate, hundreds of thousands of children with allergies, asthma, diabetes, and other medical conditions.

Prior to Awearables, Andrew was a Lead Consultant with Anichris, Inc. and Energy Media Group, LLC, where he created innovative product and marketing strategies for clients in healthcare, technology, and consumer goods.

His previous, management successes include two content platform companies. As VP Business Development for Brand Asset Digital, a disruptive technology company in the online music and entertainment discovery space, he led channel sales and engaged with clients such as Pepsi, GM, and Time Warner. He then led a spinoff of one of its business units into a new venture. Additionally, he was Founder/CEO of Handheld Media Group, where he created media assets for those engaged with handheld devices (such as the Palm and Handspring PDAs).

As a serial entrepreneur, Andrew has created and exited several successful ventures. Today, as Principal Consultant at Coastal CxO Services, he consults to add value for clients seeking to expand brands of early stage companies.

Vincent A. Mukkada, MD

Vincent A. Mukkada, MD

Gastroenterologist, Department of Gastroenterology
Cincinnati Children's Hospital Medical Center
Assistant Professor, Department of Pediatrics
University of Cincinnati College of Medicine
Cincinnati, OH

Brian J. Hom

Brian J. Hom

Brian Hom has advocated in the food allergy community for more than five years. He has made it his personal mission to raise awareness of the dangers of food allergies and to help find a cure as well as the cause of food allergies so no other families have to suffer loss of life from food allergies. Brian’s 18-year-old son, BJ Hom, died on a family vacation in 2008 after eating a dessert that contained traces of peanuts. The family was visiting a resort in Los Cabos, Mexico, to celebrate BJ’s 18th birthday and his graduation from high school. BJ did not have an epinephrine auto-injector with him because his doctors thought his symptoms would always be mild that they never prescribed auto-injectable epinephrine. Brian has two younger sons, Brandon and Steven Hom. Steven, who is now age 18, has the same severe peanut allergy as his older brother BJ and is participating in the Phase 2 Viaskin Peanut Patch Study at Stanford University with Dr. Kari Nadeau to find a cure.

Brian chaired the California Bay Area FAAN Walk for Food Allergy in 2011 and 2012 and has raised more than $290,000 through these events. He was awarded the FAAN Family Advocacy Award in 2010 and was named “Outstanding Volunteer for 2013.” Brian advocated on Capitol Hill for the School Access to Emergency Epinephrine Act and appeared on Lifetime Network’s television show, “The Balancing Act,” to raise awareness of the dangers of food allergies. Brian filmed a YouTube video for Mylan Corporation called “Food Allergies Don’t Take Vacations” and has appeared on NBC News Bay Area and KPIX Channel 5 and many radio talk shows, sharing his son’s story to raise awareness of the dangers of food allergies. He has also shared his family’s story in two news articles on CNN.com “"Study: Food allergies more common, more severe among children" and “8 percent of US children now have food allergies,” and the San Jose Mercury newspaper.

Brian is also co-founder of the Food Allergy Zone Web site with Elizabeth Hamilton-Guarino, which is dedicated to helping us all stay alive and thrive with food allergies and to find the cause and cure for food allergies. Brian has been on the Board of Director of the Bay Area Allergy Advisory Board. He is working closely with Bay-area sports teams – including the Golden State Warriors basketball team, San Francisco Giants baseball team, San Jose SaberCats arena football team, San Francisco Bulls hockey team, and the Oakland A’s and San Jose Giants baseball teams – for Food Allergy Awareness Night Fundraisers with peanut-free and food allergy courteous sections. Brian has partnered with Whole Foods Market and New Leaf Community Market on 5% Charity days as well as with Jamba Juice company. He has worked with musician Kyle Dine on many Bay Area School Assemblies to raise awareness and educate students on the dangers of food allergies. He is also a member of the California Advocates for Food Allergies, which is advocating for mandatory emergency stock epinephrine in California schools.

Brian has a Bachelor’s degree in Managerial Economics and a Master’s degree in Business Management and has been working in the high-tech industry for more than 34 years as a Global Commodity Manager for IBM, Hitachi, and HGST Inc. a Western Digital Company.


Spoon Guru

Spoon Guru

Alan J. Kelly, CFRE

Alan J. Kelly, CFRE

Alan J. Kelly has been the Vice President for Development and Alumni Affairs at Hofstra University since 2005. He is responsible for all aspects of University fund raising and development including oversight of a completed $110 million capital campaign and the launching of a new $250 million initiative. Mr. Kelly oversees all major gift activity, alumni volunteer recruitment, leadership and special events. In addition, Mr. Kelly is involved with Board recruitment and training and all leadership strategy. Over the past nine years Mr. Kelly has successfully increased Hofstra’s annual giving to more than $30 million from $11 million.

Mr. Kelly is a Redington Scholarship graduate of the University of Scranton, with a degree in history and minors in English and Theology. He is member of Our Lady of Peace Finance Council and a parish Trustee. He is a current Board member of The Viscardi Center in Searingtown NY and a former member of the Village of Lynbrook Budget Committee. Mr. Kelly is also a Certified Fundraising Executive (CFRE), a former Board member of AFPLI (Association of Fundraising Professionals), and a member of CASE (Council for the Advancement and Support of education).  Mr. Kelly has been the recipient of several awards including the 40 Under 40 Award on Long Island in 2008 and the AFPLI Fund Raising Executive of the Year 2010.  Mr. Kelly became a citizen of the United States in 2007 and currently holds dual-citizen status. He resides in Lynbrook, NY with his wife Susan and their four daughters, one who has multiple food allergies.

Advocacy Partners

Jane Robinson, PhD  Associate Professor, Department of Pediatrics

Jane Robinson, PhD 
Associate Professor, Department of Pediatrics

Pediatric Psychology
Children's Hospital Colorado
University of Colorado Denver School of Medicine
Denver, CO

Red Sneakers for Oakley

FAACT is proud to partner with Red Sneakers for Oakley to further our mission to educate, advocate, and raise awareness for all individuals affected by food allergies and life-threatening anaphylaxis.

During a family vacation in November 2016, Merrill and Robert Debbs tragically lost their 11-year-old son, Oakley, due to a fatal anaphylactic reaction resulting from a mild nut allergy.

Oakley suffered from both asthma and nut allergies. Oakley’s doctors always focused on the management process of controlling his chronically “severe” asthma. The Debbs’ received little medical advice regarding Oakley’s “mild” food allergies and anaphylactic shock.

Shortly after Oakley’s death, Merrill and Robert decided to publicly share Oakley’s story to help raise awareness about the dangers of food allergies. The Debbs’ immediately saw a need for awareness and founded the non-profit organization, Red Sneakers for Oakley, in memory of their son.

Oakley wore red sneakers in the multiple sports he played. The Debbs’ looked to Oakley’s favorite shoes as a powerful symbol to represent the severity of food allergies. Today, they encourage people around the world to wear red sneakers in support of food allergy awareness.

FAACT and Red Sneakers for Oakley are collaborating on education, advocacy, and awareness initiatives. Visit our Food Allergy Awareness Month/Week page to see more.

Keith Norman

Keith Norman

As a veteran Marine and with 20 years in the culinary arts field, Keith Norman brings a sense of discipline and order to everything he does, both in the business world and in the culinary world.  
 
Chef Norman has a passion for food safety and sanitation that is apparent in his role as Assistant Executive Chef and Food Safety Manager for the South Point Hotel & Casino and as a culinary arts instructor at The International Culinary School at The Art Institute of Las Vegas. In both roles, Chef Norman is responsible for training and educating students and culinary professionals in one of the most important facets of the food service industry.  
 
Chef Norman has worked his way up the culinary ladder at Las Vegas properties, including Bally’s, the Mirage, Treasure Island, Paris, Suncoast, and South Point hotels and casinos. He is a certified professional food manager, certified HACCP (Hazard Analysis and Critical Control Points) manager, NEHA (National Environmental Health Association) certified food trainer, NRA (Nevada Restaurant Association) certified food safety trainer, a certified registered OSHA (Occupational Safety and Health Administration) trainer and a master certified food executive. Chef Norman has trained through the FDA (Food and Drug Administration) in the areas of foodborne illness investigation, agro-terrorism and food systems disasters.  
 
Chef Norman is also a member of the Casino Management Association, International Food Safety Council, Alliance of Black Culinarians, Nevada Food Safety Task Force, and Stop Foodborne Illness.

Awards and Recognition

  • Nominated for Culinarian of the year, 2010
  • Emcee for Food Safety Day in Chicago
  • Nominated for the National Restaurant Association Best Neighbor Award
  • Guest Speaker at the 2010 FAAN conference in Las Vegas
  • 2010 FAAN Walk for Food Allergy Appreciation Award
  • 2011 FAAN Walk for Food Allergy Las Vegas, NV Committee member
  • 2012 Guest Speaker for Nevada Food Safety Task Force Conference
  • 2012 FAAN Walk for Food Allergy Las Vegas Honorary Chair
  • Stop Foodborne Illness Board Member
Luqman Seidu, MD  Owner, Omni Allergy

Luqman Seidu, MD 
Owner, Omni Allergy

Adjunct Professor, Department of Pediatrics, Morehouse School of Medicine
Director of Allergy, SEED (SouthEast Eosinophilic Disease) Center of Atlanta
Affiliated with Children’s Healthcare of Atlanta
Atlanta, GA

Corporate Partnership Opportunities

If your company or organization is interested in partnering with FAACT, please contact Eleanor.Garrow@FoodAllergyAwareness.org for more information.

Cybele Pascal

Cybele Pascal

Cybele Pascal, aka “The Allergy-Friendly Cook,” is the author of three, best-selling cookbooks: Allergy-Free and Easy Cooking, The Allergen-Free Baker’s Handbook (Martha Stewart’s #1 book pick for her show in 2010), and The Whole Foods Allergy Cookbook.

She has appeared on The Martha Stewart Show, Food Network, the TODAY Show, Good Morning America Health, PBS, and NPR. She is a leading blogger in the field, with an award-winning Web site, and lectures and teaches nationally.

She is also the Food Editor of Allergic Living Magazine.

Cybele is the founder and president of Cybele’s Free-to-Eat, a line of gluten-free foods that are also free of the top eight food allergens. Her allergy-friendly cookies were just awarded Best Gluten-Free Cookies by Good Housekeeping magazine and were recently featured on the TODAY Show as the “Healthiest Packaged Sweet”!

For more information, visit the Cybele Pascal and Cybele’s Free to Eat Web sites.

Find Cybele on Facebook at AllergyFriendlyCook, CybelesFreetoEat
Find Cybele on Twitter: @cybelepascal, @cybelesFTE

Kelly Rudnicki

Kelly Rudnicki

Kelly Rudnicki is author of the The Food Allergy Mama’s Easy, Fast Family Meals, The Food Allergy Mama’s Baking Book, and Vegan Baking Classics. She’s also the creator of the award-winning blog, Food Allergy Mama. Her blog has twice been named Babble’s Top Food Blog and ranked #6 in Healthiest Eating. She has appeared on The Martha Stewart Show, Windy City Live, WGN News, and ABC News as well as in numerous publications, including The Wall Street Journal, USA Today, Chicago Tribune, Chicago Sun Times, Parents, Parenting, Shape, Family Fun, Woman’s Day, and others.

As the mother of five young children, one of whom has severe food allergies, Kelly also spends much of her free time advocating for food allergy awareness and improving school nutrition. She volunteers and speaks on food allergy issues and helped write the food allergy guidelines for Chefs Move to Schools Chicago, an initiative launched by First Lady Michelle Obama’s Go for the Gold campaign to promote higher standards for food, fitness, and nutrition education. Kelly also serves as a Parent Ambassador for Healthy Child, Healthy World.

Kelly lives in Southern California with her husband and five children.

Jonathan Spergel, MD, PhD  Chief, Allergy Section

Jonathan Spergel, MD, PhD 
Chief, Allergy Section

Co-director, Center for Pediatric Eosinophilic Disorders
Associate Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania
Children’s Hospital of Philadelphia
Philadelphia, PA

Paul Sturkey

Paul Sturkey

Chef Paul Sturkey is familiar with food preparation at both the restaurant level and on a national scale. He is Chef Consultant in Business Development for US Foods, where he has ServeSafe Certification and educates restaurant operators the importance of safe and proper food handling and food allergen awareness.

In addition to creating culinary masterpieces for diners around the country, Chef Paul has faced more urgent food challenges at home. His son Mitchell, now 16 years old, is allergic to peanut, tree nuts, eggs, and dairy.

Chef Paul also understands the importance of gluten free food preparation and works diligently to deliver “guest first” training to servers and all front of the house employees to his US Foods customers

A native of Akron, Ohio and a graduate of the Culinary Institute of America – Hyde Park New York, Chef Paul brings over 35 years of food and beverage experience including hotels to private clubs, as well as owning seven restaurants of his own.

Chef Paul is the owner of The Paul Sturkey Bottling Company, which produces a line of salad dressings and an all-purpose seasoning. His insight into food trends as a Certified Food Fanatic keeps his finger on the pulse of what valued customers are asking for in the market place.