Our mission serves individuals, families and friends affected
by MPS in the following ways.
The National MPS Society and its members raise money to provide student fellowships and fund research projects. We participate in and host technical conferences that allow researchers to collaborate and discuss their findings. We collaborate with other lysosomal storage disease (LSD) patient support groups and family research foundations to fund research.
Our family support programs range from continuing education scholarships to medical travel expense assistance, and we publish a series of resource guides dealing with specific syndromes and treatments that can help families learn more about the MPS diagnosis and the future to come. Our digital newsletter, Courage, features stories on research and medical advances, family news, upcoming events, advocacy opportunities and fundraising efforts. Each year, we hold a conference at different locations, enabling families to meet and learn more about their disease. We also provide emotional support to all those affected by MPS.
We sponsor public events, craft press releases, publish syndrome and treatment materials, and maintain a website. This website provides updates on research, legislative activities, family support and upcoming events. We work toward enhanced treatment research and cultivate working relationships with congressional offices and government agencies and advocate for enhancements to federal programs, such as SSI, Medicaid and others important to our families. We participate in international symposiums with a global contingent of medical and scientific professionals and networks with a growing number of international sister organizations.
Started small in 1974 to today, join us on our journey and be a part of it
A group of ~10 people who had children with MPS and ML, gathered in a conference room at Johns Hopkins Medicine in Baltimore, MD. From that meeting, “Parents for MPS” was formed.
Realizing the need to expand existing research and promote new research, officers were elected to a temporary board, and the name changed to “The MPS Society.”
MPS Society became incorporated and held its first seminar, attended by 33 people.
Tax-exempt status was granted in 1986 shortly after the name of the newsletter was changed to Courage.
The MPS Society 5k walk/runs began with seven events bringing in $100,000.
The first enzyme replacement therapy (ERT) for an MPS disease was approved by the FDA, Aldurazyme for MPS I.
1997 to 2004
Legislative advocacy efforts increased research funding from NIH for MPS and related diseases. Funding increased from $5.9 million in 1997 to $9.3 million in 2004.
2005 & 2006
Naglazyme, the ERT for MPS VI was approved in 2005, and in 2006, the FDA approved Elaprase, ERT for MPS II. Getting the enzyme into the brain is the next step, and clinical trials and research continue as we get closer to a cure.
The advances in recent years from a grassroots organization could not have happened without the tremendous support of our members, our families and friends, our Scientific Advisory Board, and, in recent years, our friends in the pharmaceutical companies