MFF Forum, edition 3

MFF at the NIAMS Coalition Capitol Day

Harriet and Irv Goodman spent the day advocating with the Mycosis Fungoides Foundation at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition Capitol Day in Washington, DC. The following is an account of their experience.

On March 11, we had the rare privilege of attending the NIAMS Coalition Capitol Day in Washington, DC.

The NIAMS Coalition is a broad-based network of nearly 60 voluntary and professional organizations supporting the mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The role of the NIAMS Coalition is to broaden awareness to Capitol Hill and the public about advances in arthritis, musculoskeletal and skin disease research. Through the NIAMS Coalition Day and other special events, the Coalition brings together representatives of the medical and patient community to educate federal leaders on the value of the vast medical research supported by NIAMS.

The NIAMS mandate is extensive: it leads the federal effort on research into the basic understanding, causes, incidence, treatment and prevention of diseases of bone, joints, muscle, skin and connective tissues. These diseases and disorders are common, costly, chronic and debilitating.

We heard speakers who represented NIAMS, American College of Rheumatology Government Affairs Committee, and the House Labor, Health & Human Services Education Appropriations Subcommittee.
Our team visits to Congressional offices of Iowa, Michigan, Illinois and Ohio gave us the opportunity to express the crucial need for Congress to approve an increased allocation of funds for medical research in the area of the NIAMS sphere of interest.

There are many hands reaching out for government funding. With the world situation as it is today, and the economy being "stretched," it is unlikely that the 10% increase NIAMS is proposing will be approved. Some senators are submitting a request for 8.5%. The president's budget allots a mere 2%.

It is imperative for citizens to phone and/or e-mail their congressmen. The voices of CTCL patients and their families and friends must be heard. We CAN make a difference!

Spending the day with Judy Jones was very special. She is a dynamic person, and we will have good reason to thank her for spearheading the Mycosis Fungoides Foundation along with Judith Shea. Listening to physicians and patients present their stories was indeed a very special and memorable experience for us.

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