Running for Research

Lyle sent this letter out to most of the e-mail addresses we have for family and friends in order to raise funds for MPS research. Please consider sponsoring us in a half-marathon race on September 20. E-mail me at jadehays@comcast.net if you need our address in order to send your check. Thank you!

Family and Friends,

 

As some of you know, one of our goals for 2009 was to host a 5K run/walk event benefitting the MPS Society. The Society uses money raised from the 5K events held throughout the country to fund research grants for improving treatment of MPS. To date, the MPS Society has given $3.5 million in research grants. It is hard to believe that over the last twenty years treatment for MPS Type I - Hurler has developed from no treatment to Bone Marrow Transplant to Cord Blood Transplant to Enzyme Replacement Therapy (ERT). We couldn't be more blessed with the way Rylie's transplant went, yet we know the heavy price the treatment sometimes takes on these precious MPS kids and their families. We are hopeful that in another twenty years (if not sooner) kids will not have to endure the chemotherapy & transplant regimen to get the benefits of restoring the missing enzyme in their bodies.

 

Well, it is already August and we are nowhere close to having an event organized. So we have decided to try something a little different, at least for this year. On Sept. 20, the Boulder Backroads Marathon & Half-marathon will be occurring on the country roads north of Boulder Reservoir. The event has been set up to allow participants to pick their own charity. The event has a full marathon, half marathon, and marathon relay distance events. Jade ran in this event last year after we returned from Minnesota and commented how well the race was organized and supported (Chipotle burritos at the finish was a nice touch). The course has great views of the Front Range foothills north of Boulder. So in lieu of our hosting a race this year, we are going to use this race as our fundraising opportunity. Jade and I will be running in the half-marathon distance as a fundraising event for the MPS Society.

 

If you would like to make a pledge donation, please deliver to Jade or me a check made out to the MPS Society. In the memo line, please indicate "Rylie's Runners for Research Event - MPS 1." All donations will be tax deductible. FYI, the Society will provide receipts for any donation above $250. We will submit the funds to the Society the week of the Sept. 20. We will pass along the fundraising numbers to the race organizers and the total amount of charitable donations raised will be announced prior to the start of the race.

 

Let us know if you have any questions. We appreciate all your support of Rylie and the MPS Society.

 

Lyle, Jade, and Rylie