Terri Klein, NPGC
The National MPS Society is a 501(c)3 public charity nonprofit organization dedicated to finding cures and supporting families with MPS and ML. Since 1974, the Society has accomplished this mission through research, advocacy and awareness.
It’s Your Decision
Individual donors and fundraiser coordinators have the option and flexibility to direct where their donations or fundraising dollars are spent. They may be restricted for research or for family support.
Donations not restricted for research or for family support are considered unrestricted. As such, they are allocated by the Board of Directors to various areas across the organization where they are needed most. While some is used for general operating expenses, other amounts are used to fund other Society programs and services, including the print and electronic newsletters — Courage, the Society’s website, educational booklets, fact sheets, and our legislative advocacy program. The goal of the Society’s legislative advocacy is to support federal legislation that impacts our members and to actively support federal funding to the NIH for MPS research. Examples of legislation supported by the Society are: Newborn Screening Saves Lives Act, ULTRA/FAST language to improve access to the FDA’s Accelerated Approval process for rare disease treatments, and the Rare Disease Caucus which helps to educate legislators about the needs of rare diseases and rare disease patients. Unrestricted donations may also be used to fund programs typically funded by restricted donations, such as research and family support.
The Society funds approximately $500,000 to $750,000 each year for research. Donors determine where their research dollars are allocated — general research or syndrome specific research (MPS I, II, III, IV, VI, VII, or ML). All (100%) of the money donated for research is spent on research grants. A committee comprised of members of the Society’s Scientific Advisory Board administrates the grant review process, and all grants are peer-reviewed to ensure only the highest quality research is funded.
Family Support Donations
The family support program began with membership assistance allowing every family to be a member of the Society regardless of their financial situation. In 2016 membership dues were removed from the Society, the first time since 1982. Family needs have grown, and so have our programs. The Society now offers grants for medical equipment, education scholarships, medical travel assistance, bereavement expenses, items to make life easier, and grants for individuals with MPS and ML to have an Extraordinary Experience. The family support program also provides funding for families to attend the annual family conference and biannual conferences for bereaved families and for adults with MPS and ML. These conferences provide education, support and community for families.
For more information about donating, hosting a fundraiser, or learning about the Society’s many programs, please call the Society’s office at 877.MPS.1001.
If you would like to download this fact sheet, click below.