State and Local Initiatives
Learn how to get involved with State/Local Initiatives by finding your State Representative, using your voice, and how BDSRA can help you in your advocacy journey.
Raising awareness for Batten Disease is one of the most impactful acts of advocating for the community you can do. Educating the greater community about the issues we face can lead to building awareness and relationships that will impact change in local, state, and national policy changes.
Writing a Letter to the Editor can reach policymakers, first responders, educators, and providers that wouldn’t normally be in your circle of support. Reaching out to your local government through city council, township trustees, board of education, or county commissioners can connect your family with policymakers that may never know how their decisions impact your daily life.
When International Batten Disease Awareness Day approaches on June 9th, BDSRA encourages you to reach out to your local government entity and see if they will allow you to share your family story and recognize Batten Disease Awareness Day at their next meeting during their public comment period.
Feel free to use our proclamation template and sample cover letter to local officials below! Download the samples by clicking on the images.
Importance of Initiatives
BDSRA serves as a magnifier for all Batten voices and your lived experiences are why we advocate so strongly for change, access, and growth. We advocate alongside other rare disease organizations because we know a rising tide lifts all boats. To follow along with our advocacy efforts, please sign up for The Illuminator.
This tool will equip you with ways to advocate for your loved one with Batten. Please reach out to BDSRA if you’d like help crafting a letter, an ally in your efforts, or questions about how to advocate in your community.
How BDSRA Can Help You
BDSRA funding for services, research grants, and outreach is accomplished primarily through charitable donations. Families coping with Batten disease inspire volunteers across the U.S. and North America to dedicate hundreds of hours to support the cause of BDSRA, through events, through fundraising activities, and awareness building in their home communities. Whether it’s a 5K, golf tournament, garage sale, fun run, or lemonade stand, our supporters are tireless in their efforts, and generous with their time to bring diverse groups of people together in the fundraising enterprise. We are grateful for the ongoing support, time, and efforts that volunteers devote throughout the year to raising crucial funds for research and services. At the end of each day, this generosity enables BDSRA to help families and empower families to help each other.
For information on resources available to execute local fundraisers, please contact Amy Parker at Amy@bdsrafoundation.org.
Call To Action Center
See initiatives and causes important to the Rare Community and how to take action below.
Orphan Drug Tax Credit Advocacy Resources
Learn more about the Orphan Drug Tax Credit changes and how to take action by reading resources from community partners below:
- Everylife Foundation’s Press Release on the ODTC changes and the potential impact.
- Epilepsy Foundation’s letter to the Senate asking them to remove the very dangerous ODTC provisions.
Newborn Screening Action Center
Learn about EveryLife Foundation for Rare Diseases new resources in their new Newborn Screening Action Center below.
For more than 50 years, every newborn in the U.S. has been screened for a range of debilitating and deadly diseases through a dried blood spot taken by a heal-prick. Every year, 12,000 babies and their families benefit from newborn screening through the early detection of disease and the delivery of life-saving treatments. Newborn screening is widely recognized as one of the largest and most successful disease prevention programs in the history of the U.S.
Yet, our nation’s newborn screening system is unsustainable, and our babies are at risk.
The federal law that supports newborn screening programs expired two years ago. Currently, 33 states do not screen for all of the federally recommended conditions, leaving hundreds of babies undetected and without timely treatment each year. Newborn screening programs are in critical need of funding and resources. And limitations to the current system yield significant delays between the availability of a treatment and implementation of screening, putting infants and children at risk for preventable mortality and disability.
We can do better. Help by clicking “Take Action” below.
ScreenPlus: A Comprehensive, Flexible, Multi-Disorder Newborn Screening Program
ScreenPlus is a voluntary newborn screening research study that can help identify certain rare diseases in newborns as early as possible. Click the “read more” link below for more information.
Click here to learn more about important terms used in legislation, government initiatives, nonprofit work and the U.S Government structure.
