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Medical Conferences 2018

$1,206 of $1,000 goal

Raised by 19 people in 7 months
Hello! My name is Krista Brack and I have Ehlers Danlos Syndrome, a genetic connective tissue disorder(CTD). Life with EDS is difficult, confusing and comes with no handbook, no vacation days or time off and those of us living with it don't know what to expect day to day. Five years ago I started a support group in RI to help people living with a connective tissue disorder (EDS/CTD website) we meet monthly and have a very active group.

We focus much of our time raising awareness of EDS and related CTDs and learning how to live the best we can in our faulty broken bodies. Running the support group I try to stay up on the latest information by reading research papers and attending medical conferences that focus on these conditions. I gather information at the conferences to bring back to the members in my group too ill to travel.

While I am thankfully well enough to travel, I have been disabled, unable to work for 13 years . It's extremely important to me to be able to go to these conferences and bring back information to help all my members in the RI EDS/CTD Awareness and Support group, would you be able to help me?

Eventually I plan on making our support group a non profit and hopefully be able to better raise funds for things like this, but for now I could really use your help. You wouldn't just be helping me but all the people in RI with a connective tissue disorder! I am hoping to attend 3 conferences this year, The American's for Safe Access Unity Conference in Washington DC in May, The Marfan Foundations annual conference in Santa Clara, CA in July and the Ehlers Danlos Society annual conference in Baltimore, MD in August. Any amount will help! If all you can spare is 5 dollars that would be monumentally helpful for me! I'll be sure to post pictures of my journey and anyone local who donates 30 dollars or more will get a dozen cupcakes, any flavor made with love from me!

If you are able to help financially I will greatly appreciate it, if you're unable to donate but would like to help please SHARE this post!!!
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Hello everyone, as some of you have heard there was a fire at my home on the morning of Friday the 13th while we were at the Marfan Conference in CA. Our home is currently uninhabitable and the new custom kitchen is in ashes. We have insurance and our home will be repaired in time but we are still in California for a bit and had planned a short road trip before flying back to Rhode Island on the 24th. We don't know where we will end up living for the next 6 months while our house is repaired but it should be covered by insurance. I still have another medical conference for Ehlers Danlos Syndrome planned for August. Keeping these commitments will help me keep my mind off everything we lost in the fire, especially our beloved cat Tucker. We've used our credit cards to make the medical conferences happen and with the recent emergency this has made our finances very tight. If you are able and want to help we could use some donations to help us bring the credit card debt down to have them available to help us over the next few weeks while we get settled. We don't need much, insurance will eventually catch up but if you have some cash to spare and are willing to help please donate to this campaign. Thank you.
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The Medical Conferences I am raising money to attend are:
Marfan Foundation July 12-15, 2018, for the 34th Annual Conference held in Santa Clara, CA http://www.marfan.org/resources/patients/conference

The Ehlers Danlos Society Global Learning Conference held in Baltimore, MD August 2-4th

With in person donations I am now just 100 dollars from my goal! I've only got a short way left to go, can you help me by sharing this message and encouraging your contacts to help me out? I'm a real person with a real devastating condition and it is so important for me to attend these conferences. THANK YOU!!!
It took 28 years for me to be diagnosed
Always Fighting Zebra
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Hello everyone! Conference season is coming up fast and I still need to raise a bit more to make it to the medical conferences this year. Please help me help the RI EDS Awareness and Support group by sharing or donating to this campaign. Attending the latest medical conferences about EDS, Connective tissue disorders and rare disease makes me the best group leader I can be and allows me to share everything I learn and bring resources back to the group here in RI and all our members too ill to travel. Thank you so much for your support, for reading this, sharing it and donating, you are helping so many.

'The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.' - https://www.ehlers-danlos.com/
The Rhode Island EDS Support Group
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Thank you so much for all the donations and shares! I'm so close to my goal, maybe just a few shares away! Can you help? I'm raising money to attend medical conferences to learn more about the rare conditions I live with and share that information to the support group in RI. You can help! It is as easy as hitting share on this post, donating to the fundraiser or by purchasing some great products from Pure Haven!
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$1,206 of $1,000 goal

Raised by 19 people in 7 months
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SL
$100
Sarah Luginbuhl
3 months ago
JL
$200
Jennifer LaSpina
3 months ago
PB
$100
Phil Brack
3 months ago
ES
$100
ellen and stu Smith
3 months ago
$200
Anonymous
3 months ago
$50
Lisa Parker
3 months ago
SG
$20
Sarah Garnsey
4 months ago
MN
$25
Miranda Nero
4 months ago
$50
Anonymous
4 months ago
LL
$25
Laraine Leech
6 months ago
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