Society Priorities & Giving Opportunties

The National MPS Society is dedicated and strong. Regardless the level of contribution, your gift to the Society joins with donations made by thousands of others to maintain programs today and help shape tomorrow.

Program Graph This graph illustrates our efficiency as a nonprofit.  Our sound fiscal responsibility is recognized by esteemed organizations like Charity Navigator.  They  have awarded the National MPS Society the coveted 4-Star charity rating in multiple years. This is the highest rating a charity can receive.

The mission of the National MPS Society includes, “Support for Families. Research for a Cure.” At the beginning of each year the Board of Directors identifies key areas of required support. We welcome you to give to the Society either through Planned Giving or Partnership Grants. Here are the important programs and strategic areas of needed support:

Research Programs

Families and friends of the Society are the basic tenant of our Research Program. Currently we have funded over $4.5 million dollars for research grants. Selected research is peer reviewed by our Scientific Advisory Board and recommendations are implemented and monitored.

Today we have FDA approved treatments for three of our supported diseases, (MPS I, MPS II, & MPS VI) and currently we are in clinical trials for a treatment of MPS IVA. Still these treatments are not a cure and we do not have treatments for MPS III, MPS IVB, MPS VII and ML.

Our Scientific Advisory Board has worked with our Technical Review committee to provide a strategic plan for our research funding priorities. These priorities are made available to you through the following Research Document. Contact Barbara Wedehase, Executive Director at 919.806.0101 if you would like more information on how to establish a gift for our Research Program.

Family Support Programs

The Society understands that while we are raising funds for research, families need help. The diseases can be both emotionally and financially crippling.  We have funded over $500,000 in grants to hundreds of deserving families.  Funded grants include college scholarships, medical equipment, travel expenses for medical appointments, extraordinary experiences, emergency relief, conference scholarships, bereavement programs and more.

Consider a Planned Gift for our Family Support Programs.  This tribute could be in honor or in memory of someone special.  Please take a moment to read our family testimonies, learn more about these heartfelt programs and how the Society helps families nationwide. Contact us at 919.806.0101 if you would like more details on how to establish a gift for our Family Support Programs.

Extraordinary Experiences Program

“Thank you to the National MPS Society for approving the grant to allow us a trip to Seaworld and the Alamo!  We really needed it and it helped boost the kid’s spirits just like I hoped it would.  Things are getting so hard and it seems like we get bad news after bad news. Those three days I watched my kids smile, laugh, and enjoy life.  It was the best gift we received in a long time and it is all thanks to you.”
The Halk Family, 2012

Family Assistance Program, Medical or Durable Goods

Dear National MPS Society, I wanted to let you know that we received Jerry’s two chairs and he is enjoying using them very much! Jerry says that he enjoys being able to make himself a little taller so he is the same height as everyone else at the table. Jerry is using his chair at the dining room table and with his laptop, for school and work assignments. He also plans to use his chair at future job locations. Thank you for your generosity in considering this special grant.
Katherine, Jerry & Jerry Klemm, 2012

Continuing Education Scholarship Program

“Thank you very much for choosing me to receive the continuing education scholarship. Thanks to you and the National MPS Society I only have to pay for living expenses. It means a lot to know that there is financial support for families affected by MPS. I appreciate this scholarship very much.”
Becky Von Handorf, sister to Alyson, MPS IIIA