Society Priorities and Giving Opportunities

Regardless of the level of contribution, your gift to the National MPS Society maintains programs today and helps shape tomorrow. Here are our goal programs and strategic areas of needed support:

Research Programs

We have funded more than $4.5 million dollars for research grants. Selected research is peer reviewed by our Scientific Advisory Board and recommendations are implemented and monitored.

Family Support Programs

We have funded more than $500,000 in grants to hundreds of deserving families, including grants for college scholarships, medical equipment, travel expenses for medical appointments, extraordinary experiences, emergency relief, conference scholarships, bereavement programs and more.

 

Giving Testimonials

Planned giving

Everyone at the National MPS Society considers it an honor to recognize friends who have given estate gifts or creative gifts today. Their legacies will continue to impact Society research and family support programs now and for future generations. These are true stories of donors that have decided to make a large impact and difference:

“I was so excited when my first granddaughter was born. I was looking forward to having a little girl to play with and take shopping to buy pretty dresses and beautiful dolls. After having two sons and two grandsons, I could now buy something other than planes, trains, and automobiles. At two-years-old, Mackenzie was diagnosed with MPS IIIA. I have designated in my will that each of my grandchildren will receive a sum of money. Mackenzie’s share will go to the National MPS Society in support of research.  Mackenzie has given me many gifts; this in my gift back to her.”

– Becky, Newport News, Virginia
Grandmother to Mackenzie (MPS-IIIA)

“Our goal in creating an endowment was to provide a gift that would help ensure the longevity and stability of the National MPS Society so it can continue to support and advocate for patients and their families. The Society provides essential functions that help patients get treatments as well as support them in their daily lives. Even with treatments, the needs are not all satisfied and there is always more the Society must do. They advocated on a national level, fundraise to support student fellowships and research projects, raise awareness, and support individuals and families with both emotional and financial assistance.”

– Emil Kakkis, MD PhD, Rare Disease Specialist and Jenny Soriano

“I have been a member of the National MPS Society for 13 years and made the decision to include the Society in my estate planning to recognize its important efforts and contributions and to honor my brother who had MPS II.”

–  Christa, New York, New York
Sister of Ulrich who had MPS II, 1919 – 1964

“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

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs