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Dear Families, Friends, and Supporters of Cure JM,
Yesterday's headline could not have been worse: “Mass Layoffs Announced at Health and Human Services Department.”
Yes, that’s right. HHS Secretary Robert F, Kennedy, Jr. will cut more than 10,000 scientists, researchers and other staff members in the coming days and weeks.
Cuts at HHS and the NIH will surely impact rare disease research, and we are doing all we can to protect Cure JM's partnerships with NIH-based research units.
Protecting our mission is why I wanted to take a moment to share my appreciation for your steadfast support of my February “sign on” letter to Secretary Kennedy. As you recall, my letter to the Secretary called for the prioritization and preservation of vital NIH research partnerships that have had life-saving impacts on patients living with over 7,000+ rare diseases.
The letter underscores the efficiencies of government and private research collaborations, which have been life-saving and continue to improve the lives of juvenile myositis families.
After gaining the powerful support of over 2,000 advocates, patients, parents, grandparents, and friends, we are delivering this letter representing our rare disease community to the highest leaders at DOGE and HHS Secretary Kennedy's office. Our volunteer advocacy committee continues to connect with members of Congress with this letter and through targeted advocacy efforts.
Your signature on this letter is more than just a name; it's a beacon of hope for rare disease families fighting every day.
However, this is only the beginning...We must and will continue our fight for life-saving JM research despite the uncertainty of lasting impacts on key research partnerships.
I am again reaching out to you with an urgent request to help us preserve the vital partnerships that have and must continue to improve the lives of children living with this life-altering disease.
Critical medical advancements and clinical trials are at risk. To prevent this very real threat, Cure JM is launching the Cure JM Emergency Research Fund, aiming to raise $200,000 by April 30 to bridge this funding gap and ensure life-changing research continues.
Federal support has played a vital role in driving life-saving breakthroughs for our children. However, recent NIH cuts—including the cancellation of a major Rare Disease Summit—threaten to stall decades of progress. Without immediate action, our efforts to develop safer steroid alternatives, advance JAK inhibitor trials, and explore CAR-T therapy could be significantly delayed.
Your support is critical in our fight to protect current and future JM research—every dollar funds crucial research and clinical trials that could be in jeopardy. We must bridge the funding gaps to give children the better treatments and a brighter future they deserve.
Please join us in bridging the research funding gap by donating today at www.curejm.org/emergencyfund or send a check payable to “Cure JM Foundation” (memo: Emergency Fund) to P.O. Box 45768, Baltimore, MD 21297.
Together, we can ensure no child faces this disease without hope of a future free of JM. Thank you for continuing to stand with us.
With deep gratitude,
Jim Minow
Executive Director, Cure JM Foundation
james.minow@curejm.org
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