Advocacy for MPS
Advocacy is the best way for the MPS and ML community to share our stories with lawmakers and policy influencers who can help make a difference on a federal level. Federal policies can increase life-saving medical research and access to care for MPS patients.
The Advocacy Committee focuses on a number of goals throughout the year, including regular reviews and calls to action regarding MPS and ML legislation, carefully crafted appropriations language, reaching and spreading our message to new members, collaborating with the rare disease community as a whole, advocacy training webinars and growing and fostering relationships with key decision makers. To join the Advocacy Committee or for more information, contact Advocacy Committee Chairman Stephanie Bozarth.
Causes we champion:
- 21st Century Cures
- Newborn screening by state
- NIH research focused on MPS and ML
- Streamlining the pathway from research to treatments
- Educating decision makers on the complexities of MPS and ML
Our speakers bureau is a core group of speakers who have MPS or ML or are parents of those with MPS and ML and want to tell their stories. Our speakers educate the public and act as a community resource to raise MPS awareness.
For more information, contact us!
Now Available: Packet for members who want to meet with their Legislators. Contact Stephanie Bozarth at email@example.com.
Index of Legislative Information Resources Statements, summaries, testimony and other information of interest:
Embryonic Stem Cell Research and Therapeutic Cloning Policy Issues
MPS Society Survey Response from Sen. Judd Gregg
Rare Diseases & MPS Comments by Con. Ron Kind
Improving Special Education Services for Children with Degenerative Disorders and the Individuals with Disabilities Education Act
MPS Society FDA Congressional Statement
FDA Congressional Statement Glossary
NINDS Program Announcement with Set Aside Funds for Blood Brain Barrier Research
House LHHS Appropriations Bill Report #108-88 FY04 NINDS
Cures Acceleration Network 2010
Lifespan Respite Care 2010
ODE appropriation DC 2010
Rare Disease Caucus for DC 2010
Letter to the Honorable Margaret Hamburg, MD
Letter to the Honorable Kathleen Sebelius
Letter to Chairman Upton and Representative DeGette: Access to 21st Century Cures for Individuals with Rare Diseases
Federal Legislative Links At The National MPS Society
We are committed to informing the public about government agencies, programs, and benefits that will help families who are coping with MPS. Below are a list of links that we selected to better inform you about your local, state, and federal government.
Government Link – Description
firstgov.gov “First gov, Your First Click to the US government”. Find out about local, state, and federal government agencies, programs and benefits.
house.gov website of the United States House of Representatives. Find your representative, keep up to date on events on the House floor, or contact your representative.
NIH.gov National Institute of Health website. Find news, health information and links to NIH institutes, centers and offices.
senate.gov website of the United States Senate. Find your Senator, keep up to date on events or contact your Senator.
thomas.loc.gov Official website of the Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.
MPS Society members and government officials who wish to learn more, please feel free to contact us. We welcome your comments.
(Mother of Annabelle, MPS IV)
Board of Directors, Vice President
Legislative Committee Chair