National Scleroderma Foundation

A relentless force in finding a cure and improving the lives of people affected by Scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with Scleroderma, their families and support networks. Supported by a network of thousands of individuals across the united states, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome Scleroderma forever. Support: the Foundation serves people living with Scleroderma, as well as their caregivers and family members by providing access to support groups. In the wake of the pandemic, the Foundation pivoted from in-person to virtual community support, allowing for members of the Scleroderma community to connect no matter where they were in the country. This also allowed for the creation of more targeted, topical support groups such as one for men, which make up just 20% of the population impacted by Scleroderma, and bipoc, as well as young adults. Education: the Foundation provides education about how to live better with Scleroderma for those affected by the disease, as well as their caregivers, families and support networks. The Foundation is also a cme and cne provider, educating healthcare providers about signs and symptoms, timely diagnosis, and cutting-edge treatments and therapies. The National Scleroderma conference attracts more than 500 participants annually. Due to the ongoing pandemic, the Foundation held a virtual conference in fy 2023, which provided community support, world class education, and networking opportunities for the community via webinars. The webinars offered education and networking opportunities for people living with Scleroderma, caregivers, family members, and friends. In addition, the webinars serve as an excellent resource for physicians and other healthcare professionals, who also need comprehensive information about the disease.

Research:in fy 2023, the Foundation made a commitment of $1.8 million to fund research. This funding aims to stimulate and support investigations into better understanding the mechanisms that cause the disease, how to prevent and accurately diagnosis and treat the disease, and ultimately find a cure for Scleroderma. Each award is $200,000 spread over multiple years. In fy 2023, six awards were two-year established investigator awards, and three awards were three-year new investigator awards. New investigator awards are intended to help emerging scientists gather sufficient data to demonstrate the value of their area of investigation and attract larger funding from other sources. The Foundation's peer reviewed research grants program prioritizes scientific merit and is administered by the Foundation's research committee. This committee, composed of Scleroderma experts from across the country, makes funding recommendations to the board of directors annually after a rigorous peer review process.the peer-review research committee is composed of highly respected scientific experts who review, critique, and rank all applications based on the National institutes of health's ranking system. Only projects of significant scientific merit are funded. Each grant application contains very specific eligibility and review criteria. Details regarding these requirements are available at www.scleroderma.org. All applications undergo rigorous peer review and are scored and ranked according to the review criteria and overall merit of the proposal. Peer review rankings are sent to the Foundation's research committee for qualification before being presented to the Foundation board of directors for final approval of funding. After the awards are made, all recipients are required to complete funding contracts with institutional sign-off and must also submit annual reports on their progress. All reports are reviewed by the Foundation's research committee to ensure compliance with programmatic, scientific, and fiscal and administrative polices and requirements.