The Mycosis Fungoides Foundation is a member of the Coalition of Patient Advocates for Skin Disease Research (CPA-SDR), a coalition of national skin organizations representing individuals with skin disorders throughout the United States and the world. These organizations are dedicated to patient education, support, research, and promoting public awareness.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is a component of the National Institutes of Health (NIH). The NIAMS Coalition is composed of over 55 voluntary and professional associations concerned with their programs. Each year, CPA-SRA joins with The Society for Investigative Dermatology (SID) and NIAMS at congressional budget time to advocate for appropriate funding levels for research. The goal is to increase the NIH budget by 100% over a five-year period ending in 2002. Working as a team, appointments are made to contact representatives from coalition members' home states and key budget committee members to discuss the need for additional funding for NIH projects. Teams consisting of both physician and patient advocates made over 60 visits to congressional offices.
As a constituent, you can help too. Write your senators and representatives and ask them to support NIH funding for research. Your legislators listen to you. Your local representatives and senators addresses can be found by searching under your ZIP code on the Internet at: www.visi.com/congress/.
In a time when the national budget is overburdened with many requests for funding, it is especially important that we continue to thank the legislators who are working on our behalf in Washington and encourage their continued support of research and health issues.
More information on NIAMS can be found at: http://www.niams.nih.gov.
Senator Edward Kennedy, NIAMS Director Dr. Stephen Katz, and Dr. Thomas Kupper, SID member and Mycosis Fungoides Foundation Medical Advisory Board member, at NIAMS Day.
Members of the CPA-SDR with Senator Kennedy at NIAMS Day.
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