Action Alert for Dystonia Advocates: OMB Proposed Rule
Contact your Members of Congress to express concerns about a recent proposed rule that could negatively affect dystonia research.
Background
In late May, the Office of Management and Budget (OMB) released a proposed rule that could disrupt the current landscape of biomedical research. The proposal seeks to adopt several controversial changes to how federal research funds are awarded, including:
- Providing political appointees, without scientific training or experience, have a key role in grant review and funding decisions.
- Prohibiting the use of federal funding to publish research findings.
- Mandating prior approval for researchers to attend scientific conferences limiting further limiting the sharing of research findings.
These changes could have a detrimental effect on dystonia research and our understanding of the mechanisms of dystonia and limit the opportunity for researchers around the world to collaborate.
Take Action
In this critical moment, we need you to reach out to your Members of Congress sharing your concerns about how the rule can harm dystonia research. Please follow the instructions below to contact your Members of Congress.
- To reach the appropriate staff member who handles healthcare (the Health Legislative Assistant) in your Representatives’ DC office, first contact our dystonia advocacy staff, Briana Walker, wa****@**cw.org and provide your home address so she can identify your House Member and Senators’ Health LA. We ask that you also copy Janet Hieshetter at jh*********@*****************on.org on your email.
- E-mail your Representative and Senators’ Health LA using the draft message below. Please reach out to your Members of Congress by July 2.
*DRAFT EMAIL TO HEALTH LA*
To: [Your Representative/Senator Health LA’s Email]
Cc: jh*********@*****************on.org
Subject: OMB Proposed Rule on Medical Research
Dear [Staff Member’s Name],
My name is [your name] and I am a constituent from [hometown]. I am also an advocate for the dystonia community. I am reaching out regarding a proposed rule by the Office of Management and Budget (OMB) that could negatively impact the efforts of dystonia researchers across the country and the world as they work to improve the lives of patients in our community. The proposed changes will limit the sharing of research findings because publication fees will not be allowed and it will severely limit researchers attending conferences where the latest research is presented, debated and collaborations are formed. Dystonia requires a global effort and the proposed rule changes will limit that and patients like me will pay the price.
[Briefly share your dystonia story]
I urge your office to reach out to OMB on this matter expressing your concerns and requesting they reconsider these harmful proposals.
Please let me know if you have any questions. Thank you for your time and for considering this request.
Sincerely,
[Your Name and address]
English