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Posted on 20. July 2017

A Zebra at Disney

By Abbie Cornett

As the patient advocate for IG Living magazine, I am privileged to attend numerous patient support conferences a year. I can honestly say the Immune Deficiency Foundation’s (IDF) bi-annual conference never fails to impress me. Not only is the conference a great source of information for patients and family members who suffer from primary immunodeficiency (PI), it’s a heck of a lot of fun, too!

On Friday and Saturday, the conference began with educational breakfast symposia that featured issues of vital importance to the patient community. Walking into the breakfast symposium Friday morning, I was astounded at the number of people in the room. I was surrounded by zebras! As a PI patient, it was amazing to be in a room with so many other people who understand the issues we face.

Friday’s breakfast session offered two topics: Getting to Know Primary Immunodeficiency and Advances in Primary Immunodeficiency: Is It All in the Genes? Saturday’s topic was Patient Power: Standing as a Community in Times of Change.

While the educational opportunities were outstanding, so were the social events! Friday evening’s gala was the best I have attended. When entering the ballroom, participants immediately walked into a family friendly party, which kicked off with dueling pianos taking requests from the audiences. The whole room joined in to Neil Diamond’s “Sweet Caroline.” The conference culminated with a memorable trip to Disneyland for all participants.

The only sad note of the conference was the announcement that Marcia Boyle, president and founder of IDF, is retiring. Marcia founded IDF more than 37 years ago, after her son was diagnosed with PI. Since that time, she has been a driving force in advocacy for patients. Through her tireless dedication and work, IDF has grown into an internationally recognized patient organization. While Marcia may be stepping down, she has left a legacy for patients that will never be forgotten!

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Comments (1) -

Debra Pickering
1:23 PM on Sunday, July 23, 2017

Please tell me when anything is held in sw Florida I'm in so much pain and was misdiagnosed last year w and autoimmune disorder an put on massive doses of prednisone.  I have had huge bone pain?  I am an cvid patient for 11 plus years. 2 cancers Gilliam beret survivor and about 60xs ina hospital and surgeries etc. I raise my 14 yr old grandson. I need help. I have one Dr who is awesome. My immunologist. Other drs have no clue where this is all coming from. My oncologist is watching my cancers. Etc he is so kind.  But I'm blown up like a balloon.
Been off prednisone for many months.  Need help booklets for my 13 drs etc pls.  Naples has very little knowledge of ID. They group with autoimmune please help me. Thank you.  
Debbie

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