Epipen Summit Part 3

Blogger_Summit_Group_Photo

I had the honor and pleasure of attending a food allergy blogger conference at The Strand Hotel, in New York City this week.  There is something truly magical getting to meet people you know virtually, through Twitter, Facebook, their articles, posts, books and blogs. We all came to this meeting with no idea who the other attendees would be, so we were excited and to be honest, quite star struck to be meeting some real Food Allergy Rock Stars! The guest list included: Cybele PascalKelly Rudnicki, Heidi Bayer aka: Brooklyn Allergy Mom; Irene Chu & Sarah Chuck of Get Allergy Wise; Caroline Moassessi aka: Grateful Foodie; Elizabeth DiBurro aka: Easy Breezy Life; Joanne LaSpina aka: Food Allergy Assistant; Kim Pellicore The Food Allergy Mom; LibbyIlson The Allergic Kid; Lindsey Steffensen of Frugal Food Allergies; Lisa Rutter of No Nuts Mom Group; Missy Berggren aka: The Marketing Mama; Ruth LovettSmith of Best Allergy Sites, and Tracy Bush Nutrimom-Food Allergy Liaison. This was put together by Lauren Kashtan of Mylan drug company, makers of Epipen;  Sloane Miller, author of Allergic Girl, and Dr Ruchi Gupta, author of The Food Allergy Experience.

I have my posts split up into parts because there is a lot of information to share. Part 1 is about Sloane Miller’s presentation to us,  Part 2 is about Dr. Ruchi Gupta’s presentation, my notes and interpretation of them. [Statistics and graphics courtesy Mylan Specialty].

For Part 3 I feel I need to share that we also were addressed by Mr. Ritesh Patel, and engaging computer wiz.  His time was cut a little short, but he did share some good blogging tips and secrets with us, that we all will hopefully use to make our blogs even better.  Now I can just tell you about the women, the friends, and the chit-chat!

Prior to the summit we were asked not to talk about the upcoming meeting on our social media sites. The beauty of that, was no one knew who else would be in attendance! I was in a car en route to the hotel when I got a call from Missy, aka Marketing Mama. She was at the hotel and saw the attendee list, and recognized my name- since she happens to have my phone number! She and I met up, and I enjoyed a glass of wine prior to dinner before heading to our rooms to get ready for the dinner/meeting.

MissyNYC

Missy, [Marketing Mama] & I

 The first night of the meeting we had a wonderful allergen safe meal at the Strand prepared by Chef Kelvin Fernandez. To start out we went around the table doing introductions of who we were, and our blog/website name. After every introduction people were letting out excited gasps and squeals! Looking around that table it was easy to become star-struck! I knew almost everyone there, between blogs, books, and twitter. It was amazing to be sitting at the table with everyone! After dinner many of us went up to the Top of The Strand bar to continue talking and visiting. I even had the immense pleasure of sitting at the bar chatting with Cybele Pascal. She is so likable and  lovely!- [Pinch me!] I have been a HUGE fan and admirer of hers for years now! I can tell you that each and every one of us had tears in our eyes at one time or another over the course of the trip, sharing our stories, or from empathy hearing others’ stories. We all shared the same fears, struggles and burdens. We all knew the emotions that are part of dealing with food allergies, the fear, the mistrust, the anxiety, as well as the hope, the joy, and the success!

Mylan was responsible for putting this event together with Dr Ruchi Gupta, and Sloane Miller. I can only hope and pray that this is the first of many such events! Not only was great to be able to meet in real life- the energy, and experiences of so many of us led to some great conversations! There were many topics that we just did not have time to go over. Many such topics could be a full day conference on their own merit. Attending this Epipen Summit was such an honor! Some of the unscripted conversations [that could have been full day conferences on their on] were about:

  • Managing allergies in schools,
  • 504 plans,
  • Dating with food allergies,
  • Managing allergies in the workplace [There is NO 504 plan for adults!].
  • Educating [school nurses, allergists, doctors]
  • Find a way to track the who/what/when/why/how of anaphylactic reactions whenever Epis are used- annually-[ Since the CDC is not doing this yet].
  • Mortality, when your child grasps the concept, how to help.
  • Anxiety- coping with and working through food allergy anxieties.
  • The desire for national standards for food allergy action plans for public schools.
  • EoE & Asthma

At one point it was asked how many of us there dealt with multiple food allergies- It was rather shocking to see almost every hand in the room go up! For me, the real big “AH-HA” moment was when many of us voiced the hard truths about using the Epipen. It wasn’t the fear of giving the shot itself, but the fear of what comes after-

  • The ambulance ride,
  • The hospital stay,
  • How do you get home afterwards,
  • Needing to find a babysitter [if you have other children],
  • When there is a reaction late at night, do you want to wake up your [other] sleeping child to bring along to the hospital too?
  • The guilt [that you let this happen],
  • Facing family and friends afterwards [guilt again]
  • The COST! Especially if you don’t have insurance [crappy insurance/high deductibles]
  • The need to create some type of  ”AFTER” Care Plan

As our meeting was concluding, we all felt sad to see it end! We wanted more time! Many of us regrouped in the lounge to continue chatting. Heidi [Brooklyn Allergy Mom], Libby [the Allergic Kid], Missy [Marketing Mama], Ruth [Best Allergy Sites], Dr. Gupta, Caroline [Grateful Foodie] and I sat about chatting about what our favorite parts of the meetings were. Everyone was pretty much in agreement that just finally meeting each other was the best part of all!  ALL the attendees are simply amazing, smart women, who are passionate about what they do, and  sharing it to make all of your journeys smoother than theirs has been! I am honored and blessed to call each of them my friend! I can not thank Mylan Specialty, Lauren Kashtan, Sloane Miller, Dr Ruchi Gupta, [and everyone else too!] enough for including me at this most memorable and inspiring event. XO-Jenny

 

 

 

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6 Responses to Epipen Summit Part 3

  1. Homa February 2, 2013 at 6:46 pm #

    Love the smiling faces! And I would be so star struck, too! I love the picture of you and Missy as well, you all look radiant. :)

  2. Gratefufoodie February 4, 2013 at 6:04 am #

    It was incredible to meet bloggers who have inspired me and guided me on this food allergy journey. It was humbling and energizing and almost magical.

    The conversation whirling in the room has my head spinning…still.

    The best part was being able to hang with Jenny..mama extraordinaire!

  3. Food Allergy Assistant February 4, 2013 at 7:23 pm #

    So great to see you again, Jenny! Thanks for the great write-up on the Summit. I hope our paths cross again soon!

  4. Maya Trimner February 9, 2013 at 8:03 pm #

    This looks like it was so amazing and so inspirational! I wanna goooo!! Hopefully next year….*sigh*

  5. Gratefulfoodie February 11, 2013 at 7:04 pm #

    I am bragging on Jenny now… http://www.gratefulfoodie.com/the-power-of-a-mom/

    • Multiple Food Allergy Help February 11, 2013 at 8:24 pm #

      You are too kind my friend! xo! Jenny

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