Foundation’s Advocacy Efforts Secure Scleroderma in Approved Department of Defense Research Program

In a news release issued this week by the United States Office of Congressionally Directed Medical Research Programs (CDMRP), scleroderma was specifically listed among only 21 diseases/conditions eligible to receive medical research funding through the Department of Defense Peer Reviewed Medical Research Program (PRMRP).

Money Made Available

By act of Congress, $50 million in research grants will be made available in the Federal government’s 2008 fiscal budget to support medical research for the 21 approved diseases/conditions that were deemed to impact military personnel and their beneficiaries.

“This is a huge win for the scleroderma community,” said Frannie Waldron, Chief Executive Officer of the Scleroderma Foundation. “Not only does it open a new and significant funding resource to scleroderma researchers, it demonstrates that our message about this disease is being heard by people at the highest echelons of our national leadership.”

Foundation's Advocacy Program Played Significant Role

Indeed, the Scleroderma Foundation’s advocacy program played a significant role in helping to secure scleroderma as one of the 21 approved diseases/conditions eligible for the CDMRP funding. While not a lobbying organization, which as a 501(c)(3) nonprofit organization it cannot be, the Scleroderma Foundation has revitalized its advocacy efforts over the past year, focusing on generating greater awareness of the needs of people living with scleroderma among lawmakers and government entities.

“Getting scleroderma on the approved Department of Defense’s PRMRP list is a direct result of the Foundation’s recent advocacy work,” said Brian Ross Adams, Executive Director of the Scleroderma Foundation, Southern California Chapter and who is also a member of the Foundation’s advocacy committee. “It’s extremely gratifying to know that our collective efforts resulted in such a great outcome for researchers trying to solve the mystery of scleroderma,” he went on to say.

Advocacy Program Revitalized

The Foundation’s advocacy program was scaled back in recent years due to budgetary constraints, but with significant underwriting support from the Foundation’s Southern California, Tri-State, and South Carolina chapters, the program was revitalized in 2007 and has resulted in patient advocates and Foundation leaders making visits to legislators and their staffs on Capitol Hill; the Foundation’s participation in important healthcare coalition initiatives, such as NIAMS Coalition Day (National Institute for Arthritis, Musculoskeletal and Skin Diseases/NIH); and securing the services of a Washington, D.C.-based advocacy agency that guides the Foundation’s efforts to represent the interests of the scleroderma community to lawmakers.

But beyond what happens in Washington, much of the groundwork leading to successful advocacy efforts takes place at the local level. “People don’t always realize that advocacy efforts don’t just have to happen on Capitol Hill,” commented Ms. Waldron.  “It’s often more effective—and easier—to meet with congressional leaders when they are in their home districts and states. We encourage anyone who wants to get involved in advocacy efforts to contact the Foundation’s national office. We can plug them into the process, and it does not mean having to travel to Washington.”

Gratitude Owed to Congresswoman Linda Sanchez

The scleroderma community owes a debt of gratitude to Congresswoman Linda Sanchez of California, who met with Foundation representatives in her Southern California office. “Thanks to her interest in our cause, she spearheaded getting the language that included scleroderma into the Department of Defense funding bill,” Mr. Adams commented. “It’s a prime example of the impact people can make on a national level right in their home communities,” he said.

“We know that funding more research is the key to finding the cause and cure for scleroderma,” commented Dr. Joseph Camerino, chair of the Foundation’s national board of directors. “While the Scleroderma Foundation is proud to be the leading nonprofit organization funding peer-reviewed research, we also have a goal to secure larger dollars from the National Institutes of Health and other government agencies for scleroderma research. The Department of Defense designation for PRMRP funding for scleroderma is a huge commitment that the Foundation’s volunteers and staff made happen. We can be very proud of that!”

Researchers Encouraged to Submit Grant Proposals

This week’s news release about the funding for scleroderma through the Department of Defense Peer Reviewed Medical Research Program was a pre-announcement designed to give researchers time to plan and develop research proposals for funding consideration. The Foundation immediately sent the news to members of its Medical Advisory Board, Research Committee, and Peer Review Committee. “We want to get the word out to the entire scleroderma research community as quickly as possible so that they are ready to submit proposals as soon as possible,” Ms. Waldron said. “We want to do everything in our power to encourage new and established investigators to apply for Department of Defense grants.” She went on to say, “it’s gratifying to know that many researchers can submit grants to further research that was initiated by funds provided by the Scleroderma Foundation’s research grants program.”

You can read the full news release from the Office of Congressionally Directed Medical Research Programs by clicking on the Internet link below.  It includes more information about the program and how researchers may submit proposals.

http://cdmrp.army.mil/pubs/press/2008/08prmrppreann.htm

For more information on the Scleroderma Foundation’s Advocacy Program, call the Foundation at 1-800-722-HOPE or visit the advocacy portion of their Web site at www.scleroderma.org/advocacy/advohome.shtm.