Fundraiser for MPS

Family and Friends,

It’s time for another Rylie’s Runners for Research Event! On October 17, I will be participating in the Denver Marathon. In addition to running 26 miles, I am asking for friends and family to support me by donating at least $26 to the MPS Society. This year Lyle will be supporting from the sidelines. He and Rylie will be cheering me on along the course through downtown Denver.

As most of you know, Rylie was diagnosed with MPS1-Hurler in November 2007. She underwent a cord blood hematopoietic stem cell transplant (HSCT) in May 2008 which has been a successful treatment of her disorder. Just 30 years ago, this treatment was not an option. We feel blessed that Rylie’s treatment was available and ended in what we feel is a best-case scenario. Rylie’s successful treatment was due to the hard work and sacrifices of countless others who researched and gave time and money. Sadly, many children with MPS are not given the opportunity for treatment for a variety of reasons. First, there are many risks in HSCT, making a positive outcome very uncertain. Second, often times a diagnosis is not reached until the child’s disorder is too far along to treat. Third, other forms of MPS do not have a known treatment. So, please join us in praying for these families and support the mission of finding a cure by giving to the MPS Society.

There are two ways to give. The first is through the MPS Society’s website. The society has upgraded their website to make giving a little easier than in past years.

1. Go to www.mpssociety.org

2. Click on the red DONATE NOW button at the top right corner.

3. Read the instructions on how to sign in. If you are not an existing member, you will be asked to enter your last name and use 0 (zero) as your member ID.  You may then click the "continue" button to proceed.

4. You will be asked to give your credit card number on their secure site.

5. In the memo section, make sure to type “Rylie’s Runners for Research.” This will designate the funds so they can be identified with our fundraising event.

The second way to give is by mail. You can send a check paid to the order of MPS Society. Please mark “Rylie’s Runners for Research” in the memo. Send all checks directly to the society:

National MPS Society 


PO Box 14686 


Durham, NC 27709-4686

All gifts are tax deductible.

Thank you in advance for considering another gift to support research for MPS as we continue to pray for a cure.  

Jade Hays