By Guest Blogger Erin Malawer, Executive Director, AllergyStrong
Allergy Shmallergy blog — shmallergy.wordpress.com — @shmallergy
There was a bounce in everyone’s step as we filed into New York’s Paley Center for Media the morning of April 4th. The crisp spring air was as refreshing as the innovative inaugural Food Allergy Fund Summit which brought together scientists, researchers, doctors, psychologists, entrepreneurs, celebrity chefs and advocates to have a discussion about the present and future of food allergies.
After a warm and heartfelt introduction from Food Allergy Fund founder, Ilana Golant, and the event’s MC, Linsey Davis of ABC News, the summit began in earnest. Here are some highlights from the day’s events:
Dr. Patrick Brennan from Harvard, the first recipient of FAF’s $100,000 Innovator’s Research Grant, presented a summary of his latest research in gut bacteria. He and his team are looking at the microbiomes of different populations (allergic, non-allergic and food sensitized) to examine the differences. His work with sphingolipid molecules and B. fragilis bacteria stand out. He left the audience curious to learn more about how microbiome plays a role in food tolerance and hopeful that this research might play a role in future treatment. As Dr. Brennan said, “Food allergy is a solvable problem.”
Next, Linda Herbert, head of the psychosocial program for the Division of Allergy and Immunology at Children’s National Medical Center spoke about the psychology of food allergies.
With immunotherapy on the rise, it is expected that already stressed families will be more anxious and will need the help of mental health professionals even more frequently.
Dr. Herbert is developing a questionnaire to evaluate whether food allergic kids are adherent to management plans (since there are no biomarkers to measure this).
Bullying is in the eye of the beholder: parents and kids rarely agree on what constitutes bullying. Yes/No questions are not great predictors of bullying – have regular conversations with kids using open-ended questions.
Dr. Xiu-Min Li of New York Medical College talked about the use of Traditional Chinese Medicine (TCM) in oral immunotherapy.
TCM has safely been used as a botanical resource for food allergy, reducing inflammation and histamine response.
Phase I and II trials show a beneficial immune effect on food allergy patients.
In a study of gut microbiota, Dr. Li’s team noticed that after using TCM there was a good diversity of bacteria in the microbiome. And, increased good bacteria was associated with less histamine and therefore a muted allergic response.
Business Innovation Panel featured five companies with forward-thinking products:
Allergy Amulet: Abigail Barnes spoke about the portable allergen detection device and its many benefits. This product will confirm the presence of allergens in seconds.
Ready, Set, Food!: Dr. Katie Marks-Cogan explained the LEAP infant feeding guidelines and how Ready, Set, Food! helps prevent the development of food allergies with their powder supplements for early introduction.
Spokin: CEO, Susie Hultquist described where her app, Spokin, fits: where content meets resources for the food allergy community.
Allerje: Founder, Javier Evelyn knows firsthand how important it is to have epinephrine with you at all times. Alerje helps patients remember to carry their auto-injectors attached to their phones and alert others when they have been used.
AllerGenis: Jim Garner clarifies the world of food allergy diagnosis/misdiagnosis and the way in which AllerGenis could step in to offer certainty through new diagnostic tools.
Following recorded remarks from Congressman Ro Khanna (California) who is leading an effort to double NIH funding for food allergy research in conjunction with Senator Richard Blumenthal (D-CT), the Summit continued with a parent advocacy panel moderated by CNN’s Chris Cillizza, a fellow food allergy parent.
Each panelist represented different angles of advocacy stemming from very different experiences with food allergies:
Dr. Haidi Demain founded Allergy Safe Kids (ASK) to train school nurses about food allergies, the signs of anaphylaxis and what to do during a reaction. During conversation, she noted the need to bolster allergy management and anaphylaxis training in medical schools.
Lianne Mandelbaum established No Nut Traveler after her family was refused boarding on a return flight home because of a food allergy. She lobbies the airline industry and works with them to institute common sense policies to protect allergic passengers.
Georgina Carnago Cipriano founded Love for Giovanni Foundation when her son, Gio, experienced an anaphylactic reaction and tragically passed away. She has passed Gio’s Law in NY which requires training and allows first responders to carry epinephrine in their vehicles.
Dr. Ruchi Gupta took the stage to discuss her always-fascinating epidemiological research around food allergies. She reviewed some of the research that has reshaped how we understand food allergies as an epidemic; such as the cost of food allergies and the prevalence of each of the top 8 food allergies across childhood. And she gave us a peek at her ongoing and upcoming projects, including:
A large study on labeling to guide FDA recommendations
Upcoming Food Allergy Conference for Education and Science (FACES) conference in the fall
Dr. Hugh Sampson, of both the Jaffe Center for Food Allergy at Mt. Sinai Medical Center and DBV Technologies presented on an innovative epitope assay. This test will help diagnose food allergies more efficiently and can even predict reactivity as well as response to immunotherapy. It would, in essence, create a unique “fingerprint” for food allergy reactivity in individual patients.
Sarah Schenk, Co-Director and Producer of the documentary Missing Microbes, led a much-anticipated panel discussing the future of food allergies. Panelists included Dr. Hugh Sampson, Dr. Ruchi Gupta, Dr. Linda Herbert and Dr. Patrick Brennan, and Dr. Xiu-Min Li. Among the many fascinating twists and turns in the conversation, it was agreed that the cure for food allergies won’t likely come in one form. Just as the causes are multi-pronged, so will be curative treatment. The panel discussed the emerging and ongoing connection between the microbiome and food allergy research. In a natural segue, the conversation shifted from gut bacteria to equal access to medical care and the differences in management. In the future of food allergy psychology, Linda Herbert discussed her work helping patients distinguish the difference between symptoms of anaphylaxis from those of extreme anxiety. When layered with cognitive behavioral therapy, this practice helps patients progress further in oral food challenges.
Finally, the Summit ended with a fun and informative conversation led by Katherine Miller of the James Beard Foundation. Chefs and restaurateurs Ming Tsai, Elizabeth Falkner and Amanda Freitag all weighed in on a variety of food allergy-related issues. Ming Tsai is a food allergy parent; Amanda Freitag has a food allergy herself; and Elizabeth Falkner sees food allergy as a creative exercise for her as a chef. The chefs gave excellent advice on dining out for those that DO and DO NOT have food allergies:
If you don’t have a food allergy, Ming Tsai warns, “Never say [your food preference] is a food allergy. Because we’ve bent over backwards [in the kitchen to accommodate your preference request]. That’s not fair when the person at the next table claiming to have a food allergy could die.”
Amanda Freitag recommends telling your server whether you have a food sensitivity or a life-threatening food allergy. She also suggests calling a restaurant ahead of arrival to get a sense of how well they understand food allergies.
Ming, Amanda, Elizabeth and Katherine all agreed: speak to the top person in the room about your food allergies when you arrive at the restaurant to ensure the best experience. As Elizabeth said, “It has to start with that basic communication.”
Elizabeth Falkner welcomes food allergy requests. With refreshing perspective, she stated, “As a chef, I like challenges!” We’re left hoping more and more chefs view food allergy requests that way!
In conclusion, the inaugural Food Allergy Fund Summit had something for everyone and offered the audience an interesting insight into where the future of food allergy may be heading. For those who may have missed it, stay tuned for the announcement of a second Food Allergy Fund Summit in the fall of 2019.