Helping families find the critical information and support they need
December 11, 2019
Report from Rare Disease Week in D.C.
March 2, 2017
2019 - The Year in Review
December 31, 2019
Feeling the Love
October 4, 2014
It is hard to know how to even begin to thank everyone who helped make our participation in the Race for Every Child such a success.
As the number one fundraising team, we had a team of 35 people registered and together, they raised over $38,000 to help Elliott and kids like him get answers! This was a monumental effort. Good friends took on the challenge and in particular, with the hard work of Ariel and the Takoma Mamas/Dadas, we had over 400 individual donors make contributions to the team.
It is overwhelming when I think about the people who have stepped up to give what they can and share their support. There are a lot of friends, old and new and family members who made donations. But remarkably, a lot of the donors to the race and to our cause in general, are friends of friends. People who have never met us or Elliott. They have heard the story though, about how devastating life can be for kids with rare, poorly understood and undiagnosed neurological disorders. So devastating that Elliott, will never tell me he loves me or reach out for a hug. Not to mention ever be without the constant dependence of half a dozen machines that help him breathe, inflate or clear his lungs, or eat.
Elliott’s story highlights the current lack of funding for such illnesses and the dire need to get research into these conditions started, and quick. And with the help of all those who have made donations to date, we are on that path. People heard Elliott’s story and were moved to help. I often find myself wondering how I would step up if it were a friend of mine going through this and I only hope I could do as much as you have all done for us. We have renewed hope in a future that holds more answers for Elliott because of you. Thank you.
A huge thanks to the following people who participated in the race, donated themselves and made significant efforts to ask others they know to help us fight for Elliott and kids like him through the Race for Every Child:
Ariel, Julie & Cal, Beth & Ben, Jessica & David, Kate & Ben, Eliza & John, Janice & Yifty, Danielle, Rachel, Virginia, Elizabeth, Megan, Ashley, Summer & Dan, Melanie & Barry, Penny & Brandon, Katya & Dustin, Eileen, Mandy, David, Betty, Megan C., Hannah, and Jared. Thanks to those who made individual donations directly to our team and through these participants.
Also, a special note of thanks to JayEtta and Dan, who made a large donation from what was to be the start of Elliott’s college fund.