Episode #130: Open Book with National MPS Society
In this episode of Open Book, we hear from the National MPS Society: Bethany Greene, Director of Development and Program Support; Leslie Urdaneta, Director of Family Support; and Stephanie Cozine who is on the Board of Directors.
The National MPS Society and its members raise money to provide student fellowships and fund research projects. They participate in and host technical conferences that allow researchers to collaborate and discuss their findings. They collaborate with other lysosomal storage disease (LSD) patient support groups and family research foundations to fund research.
Their family support programs range from continuing education scholarships to medical travel expense assistance, and they 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. Their digital newsletter, Courage, features stories on research and medical advances, family news, upcoming events, advocacy opportunities and fundraising efforts. Each year, they hold a conference at different locations, enabling families to meet and learn more about their disease. They also provide emotional support to all those affected by MPS.
They 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. They 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. They participate in international symposiums with a global contingent of medical and scientific professionals and networks with a growing number of international sister organizations.
To learn more about the National MPS Society, please visit the following links:
Facebook: @NationalMPSSociety
Website: mpssociety.org