Scleroderma Research Foundation

The Scleroderma Research Foundation (SRF) is a leading 501(c)3 nonprofit organization in the United States dedicated to investing in research for a cure for scleroderma, a rare and potentially life-threatening autoimmune disease.

Background

Scleroderma is characterized by the overproduction of collagen, leading to the hardening of tissue and organ damage. Founded by Sharon Monsky in 1987, the SRF was established with the belief that medical research was crucial for improving treatments and eventually finding a cure for those living with scleroderma. Despite Monsky’s passing in 2002 due to complications from the disease, her legacy continues to drive the Foundation’s mission.

Mission and Goals

The SRF's primary goal is to fund and facilitate high-quality research aimed at understanding the pathogenesis of scleroderma and developing innovative therapeutic approaches. The Foundation works towards increasing awareness and knowledge about scleroderma among patients, the medical community, and the general public. It collaborates with top scientists and medical institutions to advance research and bring about better treatments.

Research Initiatives

• Collaborative Approach: The SRF adopts a dynamic and collaborative research strategy, involving experts from various fields including immunology, genetics, and fibrosis. It actively recruits clinical and scientific experts to join the scleroderma research community.
• Projects and Funding: Over the years, the SRF has raised millions for scleroderma research, funding research projects on the cutting edge of scleroderma investigation. Notable initiatives include the CONQUER Registry and the GRASP Project.
• Clinical Trials: The SRF has launched the CONQUEST study, an international clinical trial focusing on systemic sclerosis-associated interstitial lung disease (SSc-ILD). This platform trial aims to accelerate the development of new treatments for SSc-ILD and potentially other manifestations of scleroderma.

Education and Awareness

In addition to research, the SRF is committed to educating individuals with scleroderma and their caregivers about managing the disease. It provides resources, workshops, and updates on the latest medical research to increase awareness and understanding of scleroderma.

Fundraising Efforts

The SRF relies heavily on charitable donations to fund its research efforts. The organization’s signature fundraising event, Cool Comedy • Hot Cuisine, has contributed significantly to its research budget, raising over $29 million for scleroderma research. The continued success of the SRF is dependent on the support of its donors and volunteers.

Leadership and Governance

The SRF is guided by a Scientific Advisory Board comprising prominent scientists who oversee research funding decisions. This board ensures that all funded research is of the highest quality and has the potential to move the field closer to better treatments or a cure for scleroderma.

[1] https://scleroderma.org/scleroderma-research-grant-program/ [2] https://srfcure.org [3] https://srfcure.org/about/our-story/ [4] https://scleroderma.org/scleroderma-foundation-more-than-doubles-research-funding/ [5] https://en.wikipedia.org/wiki/Scleroderma_Research_Foundation