Please join us in supporting the National MPS Society’s 2018 Annual Fund Campaign. Learn why the Society is critical to our family and the MPS and ML community nationwide.
MPS I invaded our lives in 1994 with the diagnosis of our three precious children at the ages of four, three, and one. It decimated our beautiful, idyllic life, and we were desperate to recover it. We were lovingly surrounded by our family and friends, but we needed more. After contacting the National MPS Society, we soon attended our first Society conference where we received medical information and connected with so many knowledgeable and experienced families, researchers, and physicians who provided us the hope we desperately needed. It was a life ring of support when we were about to go under.
At the Society conference, a young researcher named Dr. Emil Kakkis described a potential treatment for MPS I. In 1998, our son Spencer entered this clinical trial and was the fourth patient in the world treated with enzyme replacement therapy for MPS. Spencer quickly went from being pushed to his favorite park in a mobility stroller to skipping and running all the way there. In 2000, our daughters, Maddie and Laynie, also joined the trial, and our family attended the FDA hearing in 2003 when the drug was approved.
A family together pays it forward helping others around the country…
Amid the chaos of trial participation and travel we were elected to the Society’s Board of Directors in 1998 and helped the Society fully embrace research for cures as well as development of family support programs. Now, as board members for the past 20 years, we have witnessed the incredible transformation and achievements of the Society, which has strengthened the entire community. We want to tell you exactly why we believe it is worthy of your financial support.
Because of generous donors like you, the Society provides an array of family support from funding adaptive equipment and home modifications to funding travel for medical treatment. We also provide college scholarships, extraordinary experiences, and assist bereaved families with their final expenses. We host and provide scholarships to attend our annual family conference, as well as conferences for our adults with MPS or ML and our bereaved families. And within the past year, we are providing home visits to all newly diagnosed families by a social worker to provide ongoing information and support. These programs are just a few of the ways the Society supports its 1,700 members through an army of volunteers, board members, and staff.
Your support has also been vital to funding unprecedented scientific advancements in research, leading to more treatment options than ever. While five of our diseases now have approved enzyme treatments, clinical trials are now underway for therapies that also treat the brain, including advanced enzyme therapies, gene therapies, and gene editing.
Until there is a treatment for every form of MPS and ML, we will continue to push forward. Until there is a cure for this deadly disease, we will continue to fundraise, advocate, unite and fight. Please keep our hope alive and support the 2018 Annual Fund!
Steve and Amy Holland
Parents of Spencer, Maddie & Laynie, MPS I