We urge our membership to call their Members of Congress to ask for their support of the following legislations:
- The Medical Nutrition Equity Act of 2017 was introduced to the U.S. Senate by Senators Grassley (R-Iowa) and Casey (D-Pennsylvania). This bill requires coverage for medically-necessary foods through Medicaid, Medicare, the Federal Employee Health Benefit Program, and private insurance.
- The Orphan Product Extension Now, Accelerating Cures and Treatments (OPEN ACT) could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for the treatment of lifethreatening rare diseases. EveryLife Foundation, NORD, Global Genes, and Genetic Alliance are among the more than 220 patient organizations supporting this bipartisan legislation.
Subscribe to the MSUD Family Support Group Mailing list (http://msud-support.org/ home page) for advocacy alert email blasts. We also encourage you to subscribe and follow NORD, Global Genes, and Rare Disease Legislative Advocates (RDLA) to keep up with the advocacy issues that face the rare disease communities.
Lastly, we want to give big congratulations to the participants of the Global Genes Denim Dash MSUD Road Warriors team. The team ran/walked 5ks throughout the month of April to raise money for both Global Genes and the MSUD Family SUpport Group. The team raised over $10,000 for the Denim Dash as a whole with $5,314.56 being donated directly to the MSUD Family Support Group. Special thank you to: Ashley Bricker, Dana Chambers, Jordann Coleman, Tracy Clouser, Karen Dolins, Michelle Flanagan, Susan Mays, Chassidy Turner-Williams, and Sarah Wagner. You are all rock stars!