Emily Hall and Rep. Ralph Hall (R-TX)

Barri Fessler, M.D. and Thomas Lehman, M.D., speakers at the 2009 Scleroderma Foundation Patient Education Conference

Richard Sagall, M.D., President of NeedyMeds

John Varga, M.D., Chair of the Scleroderma Foundation's Medical Advisory Board. He attended the 2009 Greater Chicago Chapter's Highland Park walk

Barry Sanders, former running back for the Detroit Lions, with a few youngsters at the 2009 Michigan Chapter Walk

PARTNERSHIPS

Special Holiday Edition: Reflections on 2009

12/23/09 –  In this special holiday edition of the Scleroderma Foundation’s weekly e-Letter, we’d like to share with you a few of the significant events and accomplishments from 2009. We hope this e-Letter acts as a reminder of just how much your individual support and generosity means to our mission and to those we serve.

Research
In the area of research, the Foundation awarded six proposals for scleroderma research totaling over $1 million for 2009. Five of the selected recipients were established researchers and the sixth recipient was a new investigator. The Foundation’s longstanding research program, established in 1989, has awarded funding for scleroderma research annually and to date has donated over $14.3 million in funds to research. This remains the Foundation’s largest budgeted expense each year. Click here to learn more about 2009 research grant recipients.

National Conference
This year’s National Patient Education Conference in St. Louis, Missouri, was hailed as a tremendous success. The event brought over 350 patients, families, and caregivers from across the nation together to discuss the latest information on scleroderma. With 50 workshops scheduled throughout the three-day event, attendees were able to learn from medical professionals and other specialists about new coping strategies and the latest advancements in treatments. Thanks to Conference sponsors Actelion Pharmaceuticals US, Inc., Gilead Sciences, Inc., and Pfizer Inc., new and expanded workshops were offered on “Behavioral Pain Management” and “Juvenile Scleroderma.” In addition, 19 individuals from across the country were awarded full and partial scholarships to attend the Conference thanks to the newly created Walter Coyle Memorial Scholarship fund and a grant from MediQuest Therapeutics.

The Foundation’s Saturday night awards ceremony also honored a number of volunteers, staff, and advocates for their service and dedication to the Foundation’s mission. For a detailed recap of the National Conference, click here.

The national office is already gearing up for 2010 Conference, which will be held in Boston, Massachusetts, at the Sheraton Boston Hotel. For more details, click here.

Advocacy
Advocacy initiatives flourished throughout 2009, thanks to both the leadership of the Advocacy Committee and the grassroots efforts of support groups, chapters, and volunteers. The Advocacy committee, led by Southern California Chapter Executive Director Brian Ross Adams, partnered with the Foundation’s Washington, D.C. lobbying firm, HMCW, to generate and promote scleroderma legislation on Capitol Hill. Their efforts were rewarded on May 14th, when the House of Representatives Bill 2408 was introduced by Rep. Lois Capps of California, and lead co-sponsor, Rep. Vern Ehlers of Michigan. Following that pronouncement, Senator Kirsten E. Gillibrand of New York introduced the Senate Bill 1545 on July 30th. On October 7th, the Scleroderma Foundation made a special advocacy trip to Capitol Hill to lobby on behalf of each of the scleroderma bills. Thirty-nine advocates from across the country traveled to Washington, D.C., and attended over 78 meetings with lawmakers. Executive Director Laura Dyas of the Michigan Chapter attended the Capitol Hill Day event and wrote of her experience in the December issue of the "Scleroderma Voice." You can read more about her story by clicking here.

Partnerships
Many of the Foundation’s resources and services are the product of successful partnerships with other organizations and businesses—and 2009 was no exception. The Foundation’s recent trip to the 2009 American College of Rheumatology Conference (ACR) in Philadelphia, Pennsylvania, on October 17–21, provided a great opportunity not only for awareness but for the development of partnerships with other non-profit organizations. Foundation staff set up an exhibit featuring brochures, books, and other educational materials about scleroderma and talked with attendees about the latest medical information on scleroderma. To read more about the Foundation’s ACR visit, click here.

In addition, the Foundation partnered with NeedyMeds, a non-profit organization that helps individuals find the resources they need to manage their prescription and health care costs. The latest development from this collaboration has been the Scleroderma Foundation Drug Discount Card, which can help individuals save up to 80% off their prescription drug costs. To learn more about NeedyMeds and the Drug Discount Card, click here.

With support from sponsors Actelion Pharmaceuticals US, Inc. and Pfizer Inc., the Scleroderma Foundation also continued with the development of its Echo Campaign, an innovative new program designed to help educate medical professionals about pulmonary hypertension in scleroderma patients. The second phase of the program included the debut of the "Scleroderma Spectrum," a new medical newsletter that included information on the importance of pulmonary function tests for scleroderma patients. For more on the "Echo Campaign," visit the Web site by clicking here.

The Foundation continues to develop its relationship with past and present sponsors. Actelion Pharmaceuticals US, Inc. was the 2009 National Silver Sponsor and Pfizer Inc. became the Foundation’s 2009 Communications Sponsor. Gilead Sciences, Inc. continues to sponsor the Foundation on various projects and services.

Other Notable Advancements
In an effort to engage children and youths in the Foundation’s mission of education, the Foundation launched its first “Student Essay Contest” in September. The contest will run through April of 2010 and help children, their families, and communities learn more about scleroderma.

The Foundation also debuted a “Newly Diagnosed” section to help new patients find the information and resources they need. Click here to learn more.

Your Contributions Matter
The support and generosity of all members, staff, volunteers, and sponsors have all helped the Foundation to continue its three-fold mission of support, education, and research.

As the Scleroderma Foundation nears the end of another productive year, it is important to reiterate the need for the commitment of individuals like you whose support is vital to the success of our organization.

In these economically challenging times, the Scleroderma Foundation is steadfast in its constant, passionate, and focused mission to help those living with scleroderma. Please help us to continue this commitment.

What a wonderful way to conclude a year—offering greater hope to people living with scleroderma by making a gift to support the Scleroderma Foundation's Annual Fund.

If you haven't already given this year either through the national office or through your local chapter, please consider a special holiday gift to the Foundation.

You can make your gift easily on our secure Web site by clicking on "Give Now," or by calling the national office toll free at 1-800-722-HOPE (4673) between the hours of 8:30 a.m. and 5:00 p.m., Eastern Standard Time.

Please note that you can support your local chapter by donating through our Web site or by calling the national office. All donations received from within a chapter territory are reverted to the chapter, unless otherwise directed by you.

Our Holiday Wishes for You
In closing, we would like to extend our deepest appreciation and thanks to all those who have supported us throughout the year. From all of us at the Foundation, we wish you and yours a healthy and happy new year!

Holiday Schedule for National Office
Please note that the national office will be closed Friday, December 25, 2009. The office will also be closed on New Year’s Day and will re-open on Monday, January 4. Have a wonderful holiday!