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 state and federal level. Sharing your stories, experiences, and support makes a difference in the lives of those with MPS and ML today, and those who will be diagnosed in the future. Every advocate helps further our mission to cure, support, and advocate for MPS and ML causes!
The National MPS Society hosts several opportunities to get engaged in advocacy throughout the year, with Advocacy Hill Visits occurring every spring. In recent years, the Society has participated in virtual visits through the Advocacy Associates Platform.
The Speakers Bureau and Society participated in “Virtual Hill Day” Thursday, February 23, 2023. In preparation for the virtual meetings with senators, representatives, and staffers in Washington, DC, volunteer advocates from the MPS and ML community participated in training led by Advocacy Committee Co-Chair Stephanie Cozine. Nearly 60 advocates from 25 states participated in meetings to make real, meaningful change on behalf of MPS and ML families. In these meetings, families asked their legislators to cosponsor bills and increase funding for MPS and ML research.
September is Newborn Screening Awareness Month! In September, organizations, patient advocates, and others across the country will work together to raise awareness about the importance of screening newborns for potential illnesses and genetic disorders. Follow our Facebook and Instagram pages to see the stories of MPS and ML families who received their diagnosis through NBS!
Below are the key pieces of legislation we continue to push forward in 2023. They are accompanied by one-page summaries that can be used during meetings with members of Congress.
Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, (H.R. 4472 and S.373)
Newborn Screening Saves Lives Reauthorization Act, S. 350/H.R. 482: this bill reauthorizes state grants to expand and improve screening programs, provide educational resources to parents and healthcare providers, and improve follow-up care for infants with a detected condition. The newborn screening bill passed in the House in June 2021 and currently has 12 cosponsors in the Senate as of June 2022.
On August 2, Secretary Becerra approved MPS-II for inclusion on the Recommended Uniform Screening Panel (RUSP). Conditions listed on the RUSP are provided to individual states as a recommendation for adoption for newborn screening. This acceptance follows the Advisory Committee on Heritable Disorders in Newborns and Children’s (ACHDNC) approval to move the nomination forward to the Department of Health and Human Services after a considerable evidence review. This is the first condition approved for inclusion on the RUSP since SMA was approved in 2018. Click here to learn more.
Join the Advocacy Committee to learn about how you can share your story to make meaningful change!
Recommended Uniform Screening Panel (RUSP): The RUSP is a national guideline for newborn screening (NBS). It consists of a list of conditions (PDF – 94 KB) for which the U.S. Secretary of Health and Human Services (HHS) recommends all newborns receive screening.
Newborn Screening in Your State: Visit the HRSA website to learn more about the complete list of conditions that are screened in each state.
Newborn Screening Overview: The NIH website offers more detailed information on newborn screening.
EveryLife Foundation: “Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.”
Lysosomal Disease Network: “The combined and integrated efforts of the Lysosomal Disease Network focus limited resources toward creating a network of centers with expertise in these diseases in order to solve major challenges in diagnosis, disease management, and therapy.”
Global Genes: An advocacy organization dedicated to connecting the rare disease community. It empowers patients, builds communities while seeking to eliminate the challenges experienced by people with rare diseases.
NORD – National Organization for Rare Disorders: “NORD’s voice is strongest when we all work together! We rely on patients to educate their representatives and to advocate in their local communities.”
There are no cures for MPS and ML, and only five syndrome types have treatments. Join our network of advocates in being a voice for MPS. We’ll send you updates on legislation affecting rare diseases, and you can participate in our monthly advocacy call to hear what’s on the horizon and how you can help.
I pledge to support the fight to end MPS and ML.
Whether you are an experienced advocate or new to the scene, every voice makes a difference! This support toolkit provides you with resources to share your story in a compelling way.
Advocacy Prep Webinar:
This video provides information on how to use the Advocacy Associates platform, how to craft your story, as well as tips for success!
Guide to Telling Your Story:
This webinar offers recommendations on how to effectively share your story with lawmakers.
Guide to Social Media Advocacy:
This presentation describes how you can get involved with social media advocacy and the importance online engagement.
Guide to In-District Legislative Visits:
Simplify the process of visiting with lawmakers by starting with this presentation!
Contacting Your Representatives:
This link allows you to search for your representatives’ contact information.
on preparing for Hill visits and more
National MPS Society member Stephanie Bozarth presents a webinar on how to advocate on Capitol Hill.
Whatever the situation and audience, your personal story is incredibly powerful. It’s essential that we learn how to tell our stories effectively. Maybe you’re talking to a lawmaker to urge them to fund MPS or related disease research; maybe you’re talking to a physician or a teacher about your child’s needs; or maybe you’re sharing your story with the public to raise awareness about MPS and ML. Do you want tools and easy strategies for telling your story in an effective way? Listen to the pre-recorded webinar below. The file may take a moment to download.
Are you interested in using social media to advocate to legislators about MPS and related diseases but aren’t sure how? Review the PowerPoint presentation below for tools and tips.
Are you interested in meeting with your legislators to discuss the National MPS Society but aren’t sure how? Review the PowerPoint presentation below for tools and tips.