Advocacy Toolkit
Each year BDSRA staff, board members, and parent advocates travel to Washington, D.C. to meet with legislators and appear before committees to push for accelerated drug discovery, increased services for those with rare disease, and improved FDA processes and other initiatives important to our families. Along with the Rare Disease Legislative Advocates, we join with other patient advocacy groups to speak for those who cannot.
BDSRA board, staff, and volunteers have also advocate across state legislatures during Rare Disease Day and Batten Awareness Weekend to raise awareness and increase research related funding for NCL studies. Parents of children with Batten disease have testified to committees in numerous state legislatures on a range of issues, including access to medications, accessibility, and support for services to those caring for patients with life limiting illness.
In 2013, Batten disease advocates appeared on program panels of the National Institutes of Health and National Institute of Medicine to discuss medical and ethical ramifications of gene therapy in rare disease research. In February 2014, our Batten team from BDSRA, Taylor’s Tale and Noah’s Hope visited over 40 Congressional offices on Rare Disease Day to talk about the care needs of Batten children and push for drug discovery.
Parents and board members also have testified before the FDA during public meetings and panels on patient and caregiving challenges for rare disease. Legislative alerts, testimony and panel opportunities, and FDA updates are made available to the Batten community through BDSRA communication channels.
BDSRA actively engages in educational initiatives within the medical community nationally to inform and educate physicians, neurologists, nurses, allied health professionals, genetic counselors and palliative care specialists about Batten disease, the diagnostic challenges, and research and support services available to families.
Resources for rare disease advocacy also include:
Rare Disease Week
Click here to learn more information about Rare Disease Week on Capitol Hill, occurring February 28th-March 2nd, 2023.
State/Local Initiatives
Click here to learn more about finding your State Representative, using your voice, and how BDSRA can help.
Hometown Efforts
Click the icon below to learn more about how to fundraise, resources for contacts, and how to share your story.
June 9th International
Batten Awareness Day
June 9th of every year is designated as International Batten Awareness Day. Families, their advocates, and supporters bring the message of hope and awareness of the disease to thousands of people and inspire charitable gifts to BDSRA. Through social media campaigns, hometown fundraisers, school and church events, and awareness projects, volunteers explain their connection to Batten disease and the importance of raising funds for support and research. BDSRA hosts an annual fundraiser that raises funds to help further our mission.
2023 International Batten Disease Awareness Day
After surpassing our original $10,000 goal within two weeks, we have set a goal to raise $20,000 for BDSRA leading up to June 9th, 2023!
Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all CLN types.
About this event: Join us as we celebrate families around the world and raise awareness and funds! BDSRA is hosting the 2023 International Batten Disease Awareness Day Virtual 5K on Friday, June 9th, 2023.
What exactly IS a Virtual 5K?: It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where, with whom, and even how you want to complete the 5K. This 5K can be done at any time leading up to June 9th. It can even be done in increments, keep track of your distance until you hit the 5K.
Click here to visit the 2023 registration page.
We also encourage our Batten community to seek proclamations in their local and state governments officially recognizing Batten Awareness Day on June 9th.
Recent News
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NOW OPEN: Batten Disease Awareness Day Fundraising
It's that time of year again! For this year's International Batten Disease Awareness Day on June 9th, the BDSRA Foundation is setting a $75,000 fundraising goal. The proceeds you raise towards that goal will [...]
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