If you know Nora, you know that the quote on her facebook page is the epitome of how she lives her life - If you get the chance to sit it out or dance, I hope you dance ♥️.

Nora has been living with a diagnosis of EDS since the summer of 2020. I have watched how it challenges her mind and body in so many ways that none of her friends and family truly understand, yet she still puts on the makeup, the smile and curls her hair to step outside and embrace life.

Setting up this fundraiser is the least I could do to remind our wonderful friend how many and how much people care about her. I feel helpless watching her body let her spirit down and wanted to take action. After communicating with the EDS society, I felt that creating more awareness and allowing her friends and family to contribute collectively and see what kind of impact we can make would be the best way we can make a lasting impact on this terrible condition that has affected Nora so greatly.

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For anyone who missed it, here are Nora's words on Rare Disease awareness day just a few weeks ago:

Today is Rare Disease Awareness Day, and I am the Disabled Barbie poster child of my rare disease, Ehlers Danlos Syndrome. My EDS Life: From flexible Skipper to Wheelchair Barbie, aged 20 years in the last 3 years! My wings have been clipped: so I went from Jettsetter Barbie, to Stay at Home, Comfy Barbie with a cane and wheelchair. And from not being comfortable flying abroad, to not being comfortable leaving the house. I’m not Retired Barbie, I am: Trying to Stay Alive Barbie!, complete with 14 prescriptions! I’m also a husband loving, mom of 2 Barbie ! So raise a glass and a prayer for all of the Rare Barbies in your life ♥️😘#blessed ♥️#barbie#EhlersDanlos Syndrome #DysautonomiaAwareness#MCASAwareness#POTSawareness

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Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

Please help me exceed the ambitious goal that I have set for Nora's community of supporters. Together we can make a difference.

And to our Disney and dog loving forever ask-a-nurse. We LOVE YOU!

**Heads up if you go thru the donation process - be aware of the 'TIP' charge upon checkout. You CAN click an 'Enter Custom Amount' link under the tipping scale slider and lower the tip to zero if you prefer. Otherwise a tip will auto fill around 15% to the Blackbaud organization. There does appear to be a 2.9% processing fee for credit card payments which seem to be avoidable when paying thru one of the other options (Venmo, Paypal, GooglePay) when we tested the platform.**

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EDS society history (from their site):

The Ehlers-Danlos Society was originally established as a non-profit organization in the USA in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995). The Ehlers-Danlos National Foundation (EDNF) filled a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. EDNF grew from one woman’s tireless efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. Often existing on a shoestring, the impacts of EDNF’s contributions to the advancement of Ehlers-Danlos research, patient support, and public advocacy, have been felt around the world.

From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of Ehlers-Danlos in its many, often dangerous forms—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support, advocacy, and advancement of Ehlers-Danlos patients, caregivers, and medical professionals.