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Dear Families, Friends, and Supporters,
I am writing to ask for your support in this unprecedented time—a time when it is critical that the voices of rare disease families be heard.
You are likely aware of the news of proposed budget cuts and grant freezes within federally funded institutions, including the FDA and NIH. Federally-assisted research has been a lifeline for rare disease patients, accelerating breakthroughs in gene therapy, precision medicine, and innovative treatments that offer hope where none previously existed.
We must do all we can to assure that our NIH research partnerships are protected, which is why I am asking you to “sign on” to and share Cure JM’s letter to Heath and Human Services Secretary Robert F. Kennedy, Jr. You can do so by clicking here.
For 22 years, Cure JM has been a research leader investing $27 million in critical juvenile myositis research and has collaborated closely with world-leading researchers and institutions, including the NIH, that have made life-saving progress for JM children.
We can’t sit idle while the threat of life-changing research progress hangs in the balance. With your support, we are amplifying our voices to shed light on the importance of rare pediatric disease research. The ripple effects of federal program cuts and grant freezes are being felt by our clinicians, researchers, and children’s hospitals from coast to coast.
The open letter to Secretary Kennedy stresses the critical importance of continued NIH private/public partnerships leading to better treatments and cures for juvenile myositis and other rare pediatric diseases.
Our community is resilient and united; you are parents, grandparents, children, caregivers, and patients fighting every day for better treatments, for more research, and most importantly for the hope of a brighter future.
I ask you to stand with us in urging you to prioritize rare disease research by signing and sharing the letter linked in this message. Hope is truly in the research.
Sign our letter and share your message of rare disease research here.
Sincerely,
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