Reflecting On Our 10th Anniversary Year:
2008 In Review

12/24/08 – With the New Year fast approaching, it is time, once again,  to take a look back at the events and accomplishments of 2008. In this special edition holiday e-Letter, we would like to highlight the variety of events and achievements that have made this 10th anniversary both memorable and successful.

Research
In the area of research, the Foundation awarded seven proposals for scleroderma research totaling over $1 million. Four recipients were established researchers and three were new investigators. The Foundation’s research program, established in 1989, has awarded funding for scleroderma research each year, totaling at present over $13.6 million. This remains the Foundation’s largest expense each year.

National Conference
This year’s National Patient Education Conference in Manhattan Beach, California was a tremendous success in bringing together nearly 400 individuals from the scleroderma community nationwide. The conference’s diverse workshops provided a wide array of knowledge and information from medical professionals pertaining to scleroderma, coping strategies, and the latest advancements in treatments. In addition new workshops were also featured that highlighted juvenile scleroderma.

The Foundation’s awards ceremony also proved to be a great evening for all, as Chris Harrison, host of ABC’s The Bachelor and The Bachelorette, served as the emcee for the evening. For a detailed recap of the National Conference, click here.

Feedback from the conference attendees indicated that people were quite pleased with the organization, information, and diversity of speakers and topics presented at the conference. The national office is already preparing for the 2009 conference, which will be held in St. Louis, Missouri. For more details, click here.

Advocacy
Having re-launched the Advocacy program in 2007, the Foundation is proud to see the accomplishments that have already occurred thanks to the determined efforts of the scleroderma community.

One such achievement was made on behalf of 13-year-old Cynthia Cervantes of the Southern California Chapter. Cynthia was chosen out of hundreds of applicants to speak in front of the House Appropriations Committee regarding her experience with scleroderma and the need for greater federal funding for research. Since Cynthia’s candid testimony, the NIH has awarded greater funding to scleroderma-related research initiatives.

Partnerships
An important aspect of the Foundation’s overall success lies within the partnerships made with organizations and corporate sponsors. Thanks to the Foundation’s partnership with the Pulmonary Hypertension Association, members of the national staff were able to participate in the organization’s National Conference this past June in Houston, Texas. The Foundation set up an exhibit booth stocked with information and materials for attendees. In addition, the national office exhibited at the American College of Physicians conference in Washington, D.C. This was a first for the Foundation and proved to be a great opportunity for awareness.

Attending this year’s American College of Rheumatology conference (ACR) in San Francisco, Calif. Foundation staff set up an exhibit featuring brochures, books, and other educational materials about scleroderma. In addition, the Foundation also launched its new "Echo Campaign" at the conference, a program designed to educate medical professionals about pulmonary hypertension in scleroderma patients. For more on the "Echo Campaign," see the section marked New Initiatives or click here.

In addition, the Foundation continued its partnership with Team Rensi Motorsports, as well as our pharmaceutical sponsors Actelion, Gilead, and MediQuest.

New Initiatives
As mentioned earlier, the "Echo Campaign," launched this past November at the ACR conference, was welcomed by physicians and rheumatologists who attended the conference. The program, designed to educate medical professionals about pulmonary hypertension as it relates to scleroderma, is in partnership with the Pulmonary Hypertension Association and co-sponsored by Actelion Pharmaceuticals US, Inc. The next phase of the program is set to launch in the spring of 2009.

Other Advancements
This year, the Foundation once again endeavored to improve upon the content and design of its print and electronic publications. The design and layout of the "Scleroderma VOICE," was geared towards providing easy readability and greater aesthetic appeal. The content of profile stories and other medical articles was also geared towards addressing the present needs and interests of the scleroderma readership. Thanks to the many suggestions and news tips received from our readers, the "Voice" continues to be a great success.

The Foundation also updated the Inside SF Web site for chapters and support groups. Improving upon the organization and layout of the Web site, the new design allows for easier navigation and access to a wide array of information and materials, most of which have been replaced and/or updated.

The Foundation’s home page at www.scleroderma.org underwent a redesign as well. The homepage was reorganized to provide a more user-friendly look and design.

Thank You!
As our 10th anniversary year draws to a close, it is clear that the Foundation has continued to pursue our three-fold mission of support, education, and research. It is with this in mind that we recognize such success would not have been possible without the help of each and every individual who supported the Foundation: staff, volunteers, members, donors.

As we celebrate the holiday season we would like to acknowledge every person who has made a difference to the Foundation. We extend our deepest appreciation to volunteers and staff across the nation who have devoted time, effort, expertise, and charitable contributions to our organization.

As we usher in the New Year, we bring a renewed sense of hope and purpose to our shared goal of finding a cure for scleroderma. The future holds the promise of new discoveries, new information, and new solutions for those living with scleroderma. From all of us at the Foundation, we wish you all a healthy and happy new year!

Holiday Schedule for National Office

In observance of Christmas, the National Office will be closed Thursday, December 25 and Friday, December 26. We will also be closed New Year's Day, but will re-open on Friday, January 2. Have a wonderful holiday!