2 In Disabilities

The Ehlers Danlos Society Receives $1 Million Gift To Find H-EDS Gene

Wow…where do I even start? And can I get through typing this post without crying?

So today, February 12, 2018…the Ehlers Danlos Society, which is an international organization with headquarters in both the USA & the UK, received a $1 million anonymous donation specifically to go towards research to find the genetic cause behind Hypermobile Ehlers Danlos Syndrome (H-EDS). Hypermobility Type Ehlers Danlos Syndrome is the type of EDS myself, my mother, & my maternal grandmother are all suspected to have. It is the only one of the 13 types of EDS that does not have a currently known genetic marker that can be tested for & used to prove the diagnosis. All of the money from this $1 million anonymous donation will go toward research to find that (currently undiscovered) genetic marker.

For people like me, the implications of this marker being found in my lifetime go FAR beyond just my Ehlers Danlos Syndrome diagnosis. I have 3 other diagnoses that are (or are highly suspected to be) directly related to my hypermobility-type EDS. Those 3 diagnoses are: Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis (GP), & Mast Cell Activation Syndrome (MCAS). If they find the h-EDS gene, they can start finding better treatments…not only for hypermobile EDS, but also better treatments & possibly cures for POTS, GP, & MCAS.

At this point, all of this is very likely to happen within my lifetime. That knowledge alone puts me on the brink of tears, to be completely honest. What this means…for millions of people all over the world…thanks to the incredible, indescribable generosity of 1 anonymous donor….I’m not sure if there are words for that.

From the bottom of my heart & the hearts of millions all over the world, I say this to the anonymous donor:

THANK YOU!!! Thank you for giving me hope. Thank you for giving my friends hope. Thank you for giving my family, my future spouse, and my future children hope. Thank you for giving every follow H-EDS patient, their family, & their friends…hope. There are no words for what you’ve done. There will never be words for what this incredible, meaningful, selfless gift means to millions…both past, present, & future. This gift will have a legacy & an impact forever. 

Ehlers-Danlos Society Receives Transformational Gift to Accelerate Genomic Research into Hypermobile EDS

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  • Reply
    John Donovan
    February 13, 2018 at 5:35 am

    This is tremendous news and I appreciate you sharing it with us!

  • Reply
    Laurie Donovan
    February 13, 2018 at 5:48 am

    Your hopefulness is wonderful to see and hear. People’s focused generosity, that impacts the lives of so many, is such a wonderful antidote to the sad and distressing news in the world. There are always helpers. Your publicizing this and celebrating it is part of that helping, raising awareness and hope. Good job, blogger!

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