Food Allergy Blogger Summit

Last week, I had the honor of spending time with an inspiring group of food allergy advocates, bloggers and researchers. Mylan Specialty, maker of EpiPen^®hosted a Blogger Summit* to lead an open discussion to share information and brainstorm ideas.

Click on linked names to visit the food allergy bloggers of this inspiring group.

Back row, from left: Keeley McGuire, Liana Burns of Asthma and Allergy Foundation of America, Jenny Sprague, Cybele Pascal, Lindsey Steffensen, Elizabeth DiBurro, Tracy Bush
Middle row, from left: Libby Ilson, Siobhan Cavanaugh of Mylan Specialty L.P., Kelly Rudnicki, Judy Morgitan of National Association of School Nurses, Dr. Ruchi Gupta, Lynda Mitchell of Kids With Food Allergies Foundation, Tonya Winders of Allergy & Asthma Network Mothers of Asthmatics, George Dahlman of Food Allergy Research & Education
Front row, from left: Joanne LaSpina, Ruth LovettSmith, Lauren Kashtan of Mylan Specialty L.P., Lisa Rutter, Sloane Miller, Heidi Bayer, Caroline Moassessi.

The focus on the summit was back-to-school, but any topic related to food allergies was fair game. The highlights for me included:

• 

  Dr. Gupta

  hearing from Dr. Rucci Gupta about efforts to establish a national registry to record anaphylactic reactions. Often these reactions may be documented as "wheezing" or "respiratory distress". Until we have accurate records, it is difficult to determine how many people are affected by anaphylaxis.

• discussing 504 plans with Judy Morgitan from the National Association of School Nurses  and Lynda Mitchell from Kids With Food Allergies . Any student has the right to request a

  

  Judy Morgitan and Lynda Mitchell

  504 Hearing to determine eligibility. Accommodations at school may include guidelines for hand-washing and/or a safe zone in the cafeteria.

• Updates from Tonya Winders, COO, of Allergy and Asthma Network (AANMA), Liana Burns, Manager of Policy and Programs at Asthma and Allergy Foundation of America and George Dahlman, Vice president of Advocacy for Food Allergy Research and Education (FARE). We learned how states vary in terms of access to epinephrine in schools and community

  

  http://www.aanma.org/advocacy/usanaphylaxis/

  emergency services. Check out AAFA's map to find out which US schools require stock epinephrine. Join in AANMA's advocacy efforts on behalf of all states and be on the lookout for news (and ways to get involved) of FARE's efforts in restaurant training, emergency services protocols and access to epinephrine in schools.

• reminders from Mylan Specialty of their continuing work to bring together people affected by anaphylaxis through programs like 25 Years of EpiPen^® featuring Adrian Peterson and Jo Frost, EpiPens4Schools and the Zero Dollar Co-pay Plan.

  

  Lauren Kashtan, Senior Manager
  Communications, Mylan Specialty

  (Isn't it terrifying to imagine dealing with food allergies before EpiPen®??? Twenty-five years ago, patients were told to avoid their allergic food, but in the case of accidental ingestion, get to a hospital immediately for treatment. Yikes!)

Besides all the learning, we enjoyed a fantastic dinner by Chef Kelvin at the Strand Hotel, insightful conversation with one another and a general feeling of hope and empowerment when it comes to food allergies. 

Thank you to Mylan Specialty for sponsoring this event and to Chandler Chicco Agency as well.

View of Empire State Building from The Strand Hotel Rooftop deck

*The information I share about the Mylan Summit is at my own discretion and based on my own opinion. My travel expenses for the summit were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.

Food Allergy Blogger Summit

Last week I had the honor of mixing with a great  group of food allergy educators and advocates in New York City.  Lauren Kashtan of Mylan Specialty hosted our event and we had the opportunity to hear from Dr. Ruchi Gupta and  Sloane Miller (Allergic Girl) in separate presentations. 

There is such a warmth and joy in meeting "in-person". We were 16 bloggers and food allergy parents who all "knew" one another online, but sitting together and enjoying meals and talking directly to one another really was, well...priceless. 

And, let's talk about those meals for a moment. Chef Kelvin prepared the most delicious dishes for us. Several in the group deal with their own food allergies, so the ingredients for each dish were clearly labeled and the servers were ready and able to make sure everyone got a safe meal. The salad was delish, the ribs at dinner just melted in your mouth, and the chocolate cake...well, it was simply a little slice of heaven. Food allergy families should feel very comfortable eating from Chef Kelvin's kitchen. If you've got a New York City trip planned, talk to Kelvin (kfernandez@thestrandnyc.com) before you arrive and let him help you plan a great meal at The Strand Hotel.

I took lots of notes during the scheduled sessions and I'd love to share the ones that jump out at me:

• EpiPen turns 25 this year. It was approved in December 1987. Isn't it hard to imagine managing food allergies without having EpiPen?
• Over 20,000 schools are participating in the EpiPen4Schools program.
• Chicago schools used the slogan, "We're Prepared, Are You?" when rolling out their EpiPen4Schools program. This was an effort to ensure that parents continued to send in their child's medications and didn't rely on the school to have it.
• "Anyone can be allergic to anything at any time."- Dr. Gupta
• "I will not eat for someone, ever." -Sloane Miller
• People with food allergies need to communicate (about their allergies) in a clear and factual way. Be firm in tone, without question and without apology." (This is also from Sloane.)
• Parents need to gradually allow their growing food allergic children to own their food allergies. They need to be given opportunities to speak to their allergists, to restaurant staff, teachers, friends and others so they have practice in communicating and feel comfortable doing it as adults. (This is what I took from Sloane's talk). 
• "We finally have better insurance reimbursement for food challenges," said Dr. Gupta. The hope is that this will result in more allergists conducting food challenges, the gold standard in food allergy diagnosis.
• 30% of anaphylaxis has no skin symptoms (hives, redness, etc.) (Dr. Gupta)
• Using an EpiPen is a hard decision, more so because we are aware of the chain reaction that follows- ambulance, hospital, waiting to see if there will be a bi-phasic reaction. We had a great (and sometimes emotional) discussion around this. We wondered, could there be an anaphylaxis hotline to help provide support?
• Everyone at risk needs an anaphylaxis action plan. Talk to your doctor to come up with a plan that works and then make sure that everyone is aware of the steps to take.

A huge THANK YOU to Mylan for sponsoring this event, to our speakers (including Ritesh Patel who conducted a fantastic blogging workshop), to The Strand Hotel (especially Chef Kelvin and his restaurant staff) and to  my fellow attendees: Caroline of Grateful Foodie, Ruth from Best Allergy Sites, Cybele Pascal of The Allergy Friendly Cook, Tracy from AllergyPhoods, Elizabeth  - Easy Breezy Life, Missy  - The Marketing Mama, Heidi - Brooklyn Allergy Mom, Jenny - Multiple Food Allergy Help, Libby from The Allergic Kid, Lisa from No Nuts Moms, Irene and Sarah - Get Allergy Wise,, ,  Kelly- Food Allergy Mama, Kimberly- The Food Allergy Mom, and Lindsey Steffensen - Frugal Food Allergies.

We'll always have the Rooftop...