JULIE TO RUN PORTLAND MARATHON FOR ELLIE! Sunday, October 5th, 2008 cont. By Julie McFarlane Marathon Runner

So, I am running for Ellie. Ellie is three years old, lives here in Bend, Oregon and has 22q13 Deletion Syndrome (or Phelan-McDermid Syndrome). This is a rare genetic disorder with specific developmental and physical features. It is the result of the loss or deletion of a small amount of genetic material from chromosome 22. As of February 2008, 380 adults and children worldwide had been diagnosed with the Syndrome. Because it is so rare, there is little awareness, it is often misdiagnosed and there is little, large financial support from big agencies for research. Most of the parents of these families are doing the fundraising on their own and through their own efforts. Any funds that I can raise for Ellie will be donated and earmarked, in full, to research, per Ellie’s mom, versus going to administrative costs or conference expenses. Ellie’s mom feels this is how we can help most.

I recognize that this is a tough economy and realize not everyone can donate. But, at least we will raise awareness of this little known syndrome. And if you can donate, wonderful! There is no amount too small or too large. Even a $5.00 donation would be wonderful!

The 22q13 Deletion Syndrome Foundation is a 501(c)(3) non-profit organization. All donations are tax deductible.

If you would like to donate, you have several options:

1. You can send a check to me (made out to 22q13 Deletion Syndrome Foundation) with the note “Julie runs for Ellie” on the memo line. Again, this designates that all donations are made on behalf of Ellie and earmarked for research only. This can be sent to me anytime at the address below.

2. You can send a check AFTER I finish the marathon in early October. And, only send a donation in the event I finish the 26.2 miles!!! This will force me to do it! (Although don't doubt for one second... I will finish)!

3. Lastly, you can pledge an amount PER MILE and calculate after the marathon, your donation, based on my performance.

Very importantly, since my timing and the economy is tough, just taking time to familiarize yourself with the Syndrome and building awareness is extremely helpful as well. For those of you who do donate, once I send in your check, a receipt will be mailed to you directly from the foundation.

Take a moment to visit Elle’s web site and see their most recent fundraiser here in Bend.
Flip Flops & Lemon Drops

Thanks everyone for listening and for considering this great cause and on behalf of Ellie!

Julie McFarlane
137 NW Outlook Vista Drive
Bend, OR 97701

(541) 318-5511 (if you have any questions at all, we welcome them!)