NIH Plan, Initiated by LRI Clarion Call, Brightens Horizon for Lupus Research
The Future Directions of Lupus Research—a broad and strategic plan to guide the nation’s investment in lupus research—was published in August 2007.
Thanks to those who made it happen! A key figure was House Appropriations Committee Chairman, Bill Young (R-Fla). LRI advocates first met with him in 2004.
The outpouring of gratitude for Rep. Young has been immense. In March 2008, LRI President Margaret G. Dowd (L) and the National Coalition’s Sandi Frear of Florida (R) presented the hundreds of letters of thanks sent to him through the LRI.
Thanks, Congressman Young!
October 4, 2007
The Honorable C.W. Bill Young
2407 Rayburn House Office building
Washington, D.C. 20515
Dear Congressman Young,
Little could we have imagined in June 2004 that our meeting with you in your Capitol Hill appropriations office, as advocates from the Lupus Research Institute, would make such a difference in the lives of the more than 1.5 million Americans with lupus.
Your empathy, care and responsiveness on that day, and your subsequent action through the appropriations process to invigorate the research community, has now led to concrete strategies for unlocking the mysteries of this devastating illness.
I am pleased to inform you that two years after you wrote language in the Fiscal 2005 House Appropriations Committee Report mandating development of a plan to cover the full spectrum of lupus research, a new five-year trans-NIH research plan for lupus has come to fruition.
Thanks to you and the leadership of Dr. Steve Katz at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, The Future Directions of Lupus Research—the plan to guide the nation’s investment in lupus research—was published August 5. It can be found here.
We, and millions who live with lupus every day, thank you for your vision in understanding the critical need to stimulate the cross-disciplinary research that this complex, destructive and baffling disease requires.
As the only national organization devoted exclusively to funding novel research in lupus, The Lupus Research Institute is now ready to take the next step in its leadership, to work with federal and non federal partners to see that the plan becomes a truly living document and is implemented as envisioned across the powerful Institutes of the NIH.
With sincere appreciation and very best regards,
Margaret G. Dowd
President and CEO
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A Patient’s Voice in Lupus Research
“I was thrilled to share my experiences and concerns with the esteemed panel with which I worked, and humbled to hear from several reviewers that my insights made a tangible and positive difference.” More »
LRI Advocacy in Action
- LRI advocates meet with Congressman Bill Young (R-Fla), then-chairman of the House Appropriations Committee to request trans-Institute plan at NIH.
- Language in the Fiscal 2005 House Appropriations Committee Report asks the NIH to develop a lupus strategy to “cover the full spectrum of lupus research.”
- NIAMS meeting shapes and formulates scientific plan.
August 5, 2007
- Finalized: Future Directions for Lupus Research—a plan to guide the nation’s investment in lupus.
- “The ultimate goal of this plan is to identify needs and opportunities from both public and private organizations to continue to accelerate progress in lupus research to further improve quality of life of patients who have lupus.” –Stephen I. Katz, MD, PhD, Director of NIAMS
- Across the powerful institutes of the NIH, work to prevent, treat, and cure lupus gets underway. Things are happening in lupus research.