2007: The Year in Review

This e-letter marks the final newsletter we will publish this year (we won’t publish one next Friday). With the end of 2007 just 10 days away, it is a perfect time to review the highlights of the year as we look forward to 2008, and the 10th anniversary of the Scleroderma Foundation.

Research

In the area of research, the Foundation funded seven proposals totaling $1 million. Four of the seven funding recipients were new investigators; the remaining three were established researchers. The Foundation has been funding scleroderma research projects since 1989. Since then, $12.6 million has been allocated to this research program. Funding research is the Foundation’s single largest budgeted item annually.

Funding the best, peer-reviewed scleroderma-related research remains a high priority for the Foundation. We are proud of the excellent reputation that our research program enjoys among the medical and research community. Other nonprofit organizations look to the Scleroderma Foundation as a model for their own research programs. As the business of medical research has changed, the Foundation spent significant time and effort in 2007 to improve and update our program, including the RFP process and the peer-review process. We’re grateful for the input and volunteer efforts given by our Peer-Review Committee of scleroderma researchers, as well as the efforts of our Research Committee, all of whom work many hours each year to ensure the success of this program, which is a cornerstone of the Foundation’s mission.

Beyond our own research program, Foundation representatives attended the International Workshop on Systemic Sclerosis in Italy last March; numerous internationally-renowned scleroderma researchers presented or offered workshops at our National Patient Education Conference in July in Philadelphia; and Foundation staff attended the American College of Rheumatology’s annual scientific meeting in Boston last month.

National Conference

2007 National Conference Award Winners, from left: David Parker, Rick Silver, M.D, Mary Webb, Brian Adams, Mary Blades, Josephine Battany, Barb Heenan, Tom Curran, Kris Garthe, Walter Coyle, April Simpkins, and Marie Coyle

On the subject of the national conference, our signature event in one of America’s greatest cities, Philadelphia, was a very successful program. More than 400 people attended the three-day event, which included workshops offered by scleroderma researchers, clinicians and other medical professionals, all geared to enhance knowledge about scleroderma, coping strategies, and the latest advancements in treatments. The Foundation also hosted its annual awards ceremony, where it honored outstanding volunteers and chapter and support group accomplishments.

Feedback from conference attendees was overwhelmingly positive, and we are looking forward to the 2008 conference, which will be held in Manhattan Beach, Calif., just outside of Los Angeles.

The Foundation is proud to have re-launched its advocacy program in 2007. With the help of our advocacy partner, the Health and Medicine Counsel of Washington, (HMCW), a small contingent of staff and Foundation members recently returned from a trip to our nation’s capital. During the visit, several meetings were arranged with congressional staff from key states. HMCW also arranged a valuable meeting with Dr. Stephen Katz, the director of National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS),  of the National Institutes of Health (NIH). Also this year, scleroderma was included among the diseases eligible for funding from the Department of Defense Peer Reviewed Medical Research Program in 2008—a huge win for the scleroderma community.

The Foundation continued to partner with sister organizations this year to enhance patient education programs and foster stronger relationships with medical professionals and caregivers. We partnered again this year with the  Pulmonary Hypertension Association by participating in six, one-day symposiums held in major U.S. cities. We also attended the Sjögren’s Syndrome Foundation’s National Patient Conference.

Our sponsorship of a NASCAR Busch series vehicle continued in 2007, and our racing partner, Team Rensi Motorsports, is committed to working with the Foundation to raise the public profile of scleroderma and the Scleroderma Foundation.  We’re proud to partner with them again in 2008.

Several new initiatives were introduced in 2007 that raised both awareness and money. Spearheaded by Bobbi Salmon, a women living with scleroderma and a professional golfer, the Ladies Professional Golf Association Foundation donated more than $25,000 to the Foundation through its “100 by $1,000” program. The goal of the program was to have 100 golf-related events throughout the U.S., raising at least $1,000 and awareness at each event. The Foundation, which received a portion of the funding, was aided immensely by chapter members who helped staff events in their local area.

The first “Love, Laughs and Lucien” comedy night was held in May to honor the memory of the late Lucien Hold, a comedy club pioneer who passed away from scleroderma. The New York City event featured top comedians, including a surprise appearance by Hold’s friend and comic superstar Chris Rock.

We also launched a pilot program with the Women’s National Basketball Association, a program that we hope to expand among chapters in 2008. Already, our Michigan Chapter has participated in a WNBA game, which led to an opportunity to work with the local NBA team, the Detroit Pistons. Both events were successful.

2007 Gala Honorees, from left: Barry Jaffin, M.D., Lee Shapiro, M.D., and Anthony Weiss, M.D.

New York City was home to the second annual “Swing for the Stars” gala. Co-sponsored by the Tri-State chapter, the beautiful event honored three physicians for their commitment and dedication to the scleroderma community, and raised money and awareness for both the Tri-State Chapter and the National Office.

In 2007, the Foundation spent a considerable amount of time revising the look of its printed and electronic publications. The "Scleroderma VOICE," our quarterly magazine, underwent some changes as our staff continued to enhance the quality of its content and overall look to remain the leading publication dedicated to the needs and concerns of the scleroderma community. We are truly appreciative of the many positive comments we have received about the "VOICE" this year as we strive to continually improve this important publication.

The Foundation also updated its brochure series. New brochures were added to our library and a new design was adopted. A debt of gratitude is owed to the Foundation’s Medical Advisory Board, as well as to other medical professionals throughout the country, who wrote, edited, and advised on this project.

The Foundation’s home page at www.scleroderma.org underwent a redesign as well. The goal was to make the page more user-friendly and easier to navigate to sought-after links.

Thank You!
We hope you’ll agree that 2007 was a great year for the Scleroderma Foundation. As we continually strive to meet our three-fold mission of support, education, and research, we realize that none of our work or accomplishments is possible without the help of many people. As we go through this holiday season, we want to thank our volunteers across the nation who have given countless hours of manpower and support to the Foundation. Also, we wish to thank all of you who have donated much-needed funds to our cause, either by supporting your local chapter, support group, or the national office.

We are confident that 2008 will continue to bring us closer to identifying the cause of and a cure for scleroderma. In the meantime, we remain committed to helping you and your family manage the disease to the best of our ability.

Holiday Schedule for National Office

In observance of Christmas, the National Office will be closed Monday and Tuesday, Dec. 24 and 25. We will reopen on Wednesday, Dec. 26. We will also be closed New Year's Day.