EDS Awareness Booth at the 2013 EDNF Conference

Don’t miss the 2013 EDNF Conference in Providence, RI.

EDSawareness.com will be a sponsor again this year.  Stop by our booth to learn more about our free support group program!

Here is a summary of the 2012 conference experience:

Attendees witnessed several exciting announcements at the 2012 EDS learning conference!

It was announced that the EDNF is working toward forming an international research registry! We will be asked to  donate blood and/or tissue samples to help in the effort.

In addition, plans are underway to found an EDNF Clinical Care and Research Center! The location of the proposed center has not been determined; several institutions are being considered. It would be a single location for EDSers to receive treatment by EDS experts in various specialties. This will be expensive, of course, so we are all encouraged to raise money and awareness for this endeavor.

Dr. Grahame was honored with a “Lifetime Achievement Award”… To which he responded, with a gentle smile, “Thanks for the eulogy!” Awards were given to Dr. Brad Tinkle, Dr. Clair Francomano, Mark Martino, Sue Jenkins and others who dedicate their lives to helping our EDS community.

Dr. Grahame gave a great presentation. It reviewed data shared last year, but added recent studies showing how Rheumatologists’ awareness and recognition of EDS has improved within the last decade. He also talked about the effects of chronic pain. Dr. Francomano went into more detail about chronic pain, potential causes for EDS pain and made suggestions pain control and therapies to try. Dr. Tinkle’s presentation focused on the genetics and diagnosis of EDS. He also talked about the Ehlers-Danlos International Symposium in Belgium in September. For more information, click here.

The lineup of speakers was excellent this year and included familiar experts such as Drs. Levy, Agnew, Mitakides and Pocinki. We enjoyed new topics and new speakers, such as: Dr. Andrew Smith speaking about Mast Cell Disorders, Dr. Ron Jaekle on Pregnancy, and Dr. Keith Kenter on Shoulder Instability. Physical therapy and occupational therapy were well covered with multiple sessions. The classes on tai chi, aquatic exercise, and pilates were very informative.

The Cincinnati venue was very convenient and easy to navigate. The organizational staff is to be highly commended for catering to EDSers with dietary restrictions. We were provided with a wide variety of choices, including vegetarian, kosher and gluten-free. Full lists of ingredients were provided. Nutritious snacks kept our energy going, such as: fruit, berries, gluten-free snack options and coconut water for POTS. Thank you, EDNF!

The banquet was a formal event, and most of us dressed up to celebrate! The silent auction must have been 4 times larger than last year; the tables spanned both sides of the enormous ballroom. Approximately $28,000 was raised for the next year’s conference and EDNF’s new ventures. The kids & teens raised $2,202 from their raffle.

The banquet closed with the playing of our theme song – while EDSers joined hands in a giant circle – symbolizing our support for each other. It was a great experience, and no one wanted to leave when it was over… We reluctantly parted from our old and new friends, feeling that familiar mixture of exhaustion and elation. It was well worth every “spoon” we used up! The conference is a priceless experience. If you missed it this year, we hope you can join us this year!

  • riems

    Deanna is, as usual, wonderfully kind and positive in her comments. It is the positive energy and support of people like her that make all the effort of putting on the conference worthwhile, and make it the success that it is each year.

    It was extremely exciting to be able to announce EDNF’s commitment to establishing an international research registry and an EDS clinic and research center. Although there is still much work to be done and some obstacles to overcome, I have no doubt that the clinic and registry will be realized. The need for resources like these is too great for them to languish as unfulfilled dreams any longer. I have no doubt that the generous support shown by everyone at the conference will help make this happen for the good of all of us, and sooner rather than later.

    For me, even with the excellent speakers and new found knowledge I come home with, the best part of each conference is meeting new people and making new friends, and this year certainly proved no different. I met numerous wonderful people, including many from the Cleveland and Cincinnati local groups. It once again reaffirmed my wholehearted belief that the EDS community is the most supportive and giving group of people I have ever met. Whether sharing their knowledge and experience with everyone, helping someone make it through the day, or simply offering a shoulder to cry on when needed, everyone was more than willing to be of help however they could…and always with a smile that had to belie how tired they must have been. It is this spirit and energy that makes the conference so worthwhile for me each year. And be assured that every spoon of her own that Deanna or someone like her used up soon found its way to someone else needing a bit of renewed hope and energy. It’s an amazing and rejuvenating event for all of us.

    Thanks to Deanna and everyone who came and gave so much of themselves once again this year. I hope everyone considering coming next year will be able to make it and share in this incredible experience with us. If not, it is reassuring to know that you will find the same sort of information and support here, thanks to the tireless work of Deanna and her father.

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