Might You Be Able To Help?

Yesterday was a source of many reminders to myself for topics for future blog posts, but there’s something that I wanted to share that’s of greater importance.

Over the years I’ve mentioned the tremendous support that I and other ECD patients have received from the Erdheim-Chester Disease Global Alliance. Rather than paraphrase the goals and significant accomplishments of the Global Alliance team, I’ll provide an excerpt below from the email I received.

After the excerpt, there’s a link that we members are being asked to share, I do so gladly and in the hopes that perhaps a few of you might consider a donation to help out this wonderful organization. If you’re short on time, I’ll make this even easier with this link for online donations.

http://www.razoo.com/story/Ecd-Global-Alliance

We need your help.  Progress is being made in learning more about ECD and raising awareness, but there is still much to do.  Unfortunately, many activities take funding to accomplish.  As an organization we are committed to helping patients rather than focusing on raising funds, but the fact is that funds are needed to accomplish many of our goals.  Many of you have already volunteered and made donations this year, and we thank you greatly for your contributions. 

The following are but some of the organizational activities that are ongoing at this time:

· Funding a third research study devoted to learning more about ECD

· Hosting the first ever ECD Medical Symposium 

· Teaming with researchers who are actively studying ECD

· Hosting the first ever ECD Patient/Family Gathering (Nov. 1-2, 2013) 

· Creation of a video to explain ECD

· Supporting patients/family members through the chat sessions, www.rareconnect.org, phone calls, emails, etc..

And here’s the link to the letter with even more detail:

https://docs.google.com/document/d/15aYDikRHfNsMET3GlwtQSxs3fJMJAR21lT2BC9BsCCQ/edit?usp=sharing

If you got to the end of this post, I extend my thanks for reading about what the ECD Global Alliance is doing for patients like myself. I truly don’t know how I would have waded through the realities of dealing with this illness without their support and encouragement. Special thanks and much love to President Kathy Brewer, a woman who moves mountains for we “ECD-ers” and our families.