This month during Food Allergy Awareness Week, Robert F. Kennedy Jr., member of the Board of Directors of the Food Allergy Initiative (FAI), announced the formation of FAI’s new Advocacy Steering Committee. The committee’s objectives are to build a nationwide network of advocates to raise the profile of life threatening food allergies and to actively seek increased federal funding for food allergy research.
Mr. Kennedy said that “FAI is tremendously honored and grateful to have such an esteemed group of parents who are willing to join our effort to find a cure. These parents are proven advocates and support group leaders in their local communities. We are thrilled to add their energy and expertise to our advocacy program.”
I am grateful that I will be working with this group of advocates and very proud that I’ve been asked to chair this committee. While I’ll surely enjoy and learn from my peers, I know there is a lot of important work ahead of us.
The statistics on food allergies are startling. More than 12 million Americans are affected. At least one out of every 25 children has at least one food allergy. Peanut allergy among children was shown to have doubled in just five years, from 1997-2002. Experts now call the incidences of anaphylaxis (severe allergic reaction) an epidemic. Food-allergic reactions send approximately 125,000 Americans to the emergency room – and are responsible for an estimated 150 deaths – every year. And studies have shown that children with food allergies have a much lower quality of life than their peers.
Our nation's health care leaders need to better understand the importance of finding a cure given how widespread food allergy has become. This invisible life-changing illness not only threatens lives but affects every aspect of life for children and their families.
Yet our federal government spends only about $17 million a year on food allergy research -- far less than other important diseases.
For the past 11 years, the Food Allergy Initiative (FAI) has led the way in funding research to find a cure to this life-threatening disease. FAI is the largest private source of food allergy research funding, to the tune of $60 million thus far.
But we need more. To that end, FAI has bolstered its advocacy capability, hiring veteran Washington strategist Steve Rice as Director of Public Affairs and engaging the advocacy steering committee to help raise awareness about the need for more federal funding of food allergy research.
This research is critical, especially since scientists believe that with proper funding, there is an excellent chance they could find a cure within a decade!
Mr. Rice said that his goal for this new committee is to “build a national network of food allergy advocates that can impact the public policy arena -- and to establish FAI as a clearinghouse for support groups around the country that would like to get more involved in finding a cure." This is exciting as it is the first time food allergy parent advocates have been able to work together harnessing all of that passion, energy and experience. Committee member Denise Bunning shared “This is what I’ve been waiting for for 12 years!”
I’m naturally motivated to support any cause that will bring us one step closer to a cure. I’ve volunteered with FAI over the years, and was always happy to help. But this opportunity means so much more to me. I am really excited to be working side by side with these extraordinary moms who not only care for their children but have chosen to become authors, educators, advocates, and support group leaders on top of everything else. During our first conference call this week, I was so impressed with how these women played the cards they have been dealt. None of us would have chosen this road, but we can surely enjoy the company along the way!
Steering committee members include:
- Gina Clowes, Chair – AllergyMoms; Cranberry Township, PA
- Denise Bunning – Mothers of Children Having Allergies; Lake Forest, IL
- Nicole Smith – Allergic Child; Colorado Springs, CO
- Sue Wagner & Carol D’Agnese – San Diego Food Allergy; San Diego, CA
- Rhonda Riggott Stevens– Education & Advocacy Solutions; Durham, CT
- Debbie Hogan – Parents of Children with Food Allergies; Tampa, FL
- Maria Acebal – Safe at School Partners, Bethesda, MD
- Nona Narvaez – Anaphylaxis & Allergy Association of Minnesota; St. Paul, MN
- Barbara Calluori– Food Allergy & Anaphylaxis Coalition of NJ; Nutley, NJ
- Sari Canell – Food Allergy Educational Alliance; Scarsdale, NY
- Chris Hardy – Parents of Allergic Kids; Charlotte, NC
- MaryKay Hill – Vermont Food Allergy Organization; Shelburne, VT
- Sally Porter – Food Allergy Initiative Northwest; Sammamish,
For more information, please visit www.faiusa.org
Published On: May 28, 2009