A request

For those of you on Facebook, would you mind voting for Ehlers Danlos Network Cares in the Chase Community Giving? That organization has very low overhead, and has worked hard to make it the current Round 2 (Top 100) of the giveaway. And earned $25,000 thus far. 🙂

They are trying to raise money for Ehlers Danlos syndrome (EDS) research via funding a mouse model for EDS type IV (Vascular), which is the type that greatly affects life expectancy.

There are 2 steps to the process:

First, become a fan of Chase Community Giving here

Once “become a fan” you are given 5 votes. This is the charity I am requesting that you vote for. And you have 4 votes left over to vote for 4 others. 🙂

Thank you very much.

More, from Ehlers-Danlos Network Cares:

The Issue

Could YOU have Ehlers-Danlos Syndrome (EDS)? EDS is a life-threatening, painful, crippling genetic disorder caused by faulty collagen. It weakens the connective tissue causing fragile skin, joints, ligaments, organs, and blood vessels. EDS is misunderstood, grossly misdiagnosed, and some 90% never receive a proper diagnosis in their lifetime. There is no funding for research. There are no treatments. There is no cure. Today, we are at the threshold of promising research that can change all this and offer those who suffer, HOPE. It’s estimated that 1,358,640 people are affected worldwide, and thousands die. Sadly, many are diagnosed at autopsy after catastrophic internal ruptures. Yearly, 30,000 children are born with bleak futures as they struggle with lifelong consequences due to EDS. Our HOPE is to continue to fund research, increase education/awareness, find treatment options, and save/improve lives. Help us find that cure. Thanks Chase for the opportunity and for YOUR vote!

The Plan

Our HOPE lies in our plans to fund vital medical research, increase education, and conduct pediatric outreach initiatives. Our organization is run solely by volunteers, allowing us to have a greater financial impact in all these areas. Our present research is being conducted at Johns Hopkins University. This is an extension of prior research on similar disorders that have shown certain therapeutic medications already approved have reduced fragility of the vascular system and prolong lives. There is evidence that the same process is at work in vascular EDS, and will yield the same results. The initial start-up cost is $100,000, and an estimated $200,000 per year for 3 years. Create educational and medical programs for the medical community to effectively diagnose, care for and treat EDS patients; Diagnostic charts inserted into Pediatric Medical Journals; Sponsor safe medical camps for our youth; School Medical packets, to increased understanding and public awareness.

The Outcome

Our HOPE is that this research will succeed so that people will no longer suffer or die from EDS; that an accurate EDS research model will be completed in 2010; that in 2 years, medication treatment trials, much like current Marfan trials, will begin, and by 2014, we will implement a revolutionary new treatment for vascular EDS. We HOPE that new spinoff research will uncover effective treatments for all types of EDS, and open doors for funding other sources of long-term research. We will consequently reach over 200,000 in the medical community who will benefit from new evidenced based publications to effectively recognize and manage EDS patients, optimize successful surgical outcomes, and improve the quality of life for the EDS community. These programs, as well as our pediatric initiatives, will be completed by 2011. In order to accomplish our long term mission and ensure our future, endowments will be established. Our job is to bring these goals to fruition. Lives are depending on it!

(Crossposted to my main blog)

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  • Yvette  On January 18, 2010 at 3:23 am

    I am telling everyone I know: vote, vote, vote!

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