eNews: March Edition

SRF Research

Science Workshop

The Scleroderma Research Foundation will be hosting its Annual Science Workshop on May 5-6, 2023. This event is an integral part of the SRF's grant-making process and provides an opportunity for interdisciplinary collaboration. We bring together our Scientific Advisors, funded investigators, applicants, outside experts, and industry partners for an intensive two days of evaluation, discussion, and brainstorming.

At the SRF Science Workshop, every current investigator and invited new applicant presents his or her research project and progress to the Scientific Advisory Board and other attendees. The ensuing discussion of projects and new ideas is animated, yet collaborative.

The Scientific Advisory Board reviews the information presented at the workshop to make funding recommendations that guide the SRF's research program—so that one day, we can find a cure for scleroderma.

Image: SRF-funded researchers Dr. Kathryn Torok and Dr. Wei Chen in discussion at last year's Science Workshop

Making a Difference

Bet on a Cure

Ever since Joan Kosmach passed away from scleroderma complications in 1995, her five children, and their friends and families, have raised funds and awareness for this disease. Last month, they hosted the 13th edition of "Bet on a Cure," a festive casino party, with more than 90 guests in attendance.

The evening was an incredible success, raising more than $22k! To date, the Kosmach/Schumacher family has raised over half a million dollars for research. "The Kosmach/Schumacher Family will continue our efforts until we find a cure," says Diane Schumacher.

Our deepest gratitude goes to the Kosmach/Schumacher family for all they've done to support research here at the Scleroderma Research Foundation over the years. Your dedication to raising funds and awareness of the need for research has helped advance cutting-edge investigations into scleroderma. Thank you, so much.

Image: Kenny & Alita Hudson, Sandy Ribich, Annette Kosmach Michaelsen, Diane & Michael Schumacher

A Big Thank You to Our Online Fundraisers

Did you know that Facebook fundraisers are a simple, effective, and immediate way to fundraise for your favorite nonprofit causes? Last year, 934 dedicated supporters chose to fundraise for the Scleroderma Research Foundation—nearly double the amount from the year before!

Those powerful fundraising pages resulted in 2,580 generous donations–totaling over $113,000 to support the SRF's research and education programs. Thank you to all who hosted and/or donated to an SRF Facebook Fundraiser for helping to advance research and improve the lives of people living with scleroderma.

Get Involved

RDDC/NORD Survey

Your voice matters! The National Organization for Rare Disorders and the Rare Disease Diversity Coalition created a national survey for rare disease patients and caregivers. The survey focuses on people of color and other underrepresented communities, and we encourage anyone who identifies as such to learn more.

Since scleroderma is one of over 7,000 diseases identified as rare, your answers are an important part of the big picture. You can help them better understand what unique experiences you have in accessing and affording health care.

The Scleroderma Research Foundation is a proud member of the Rare Disease Diversity Coalition.

Administrative Updates

2023 Platinum Seal of Transparency & 4-Star Rating

The Scleroderma Research Foundation recently earned a 2023 Platinum Seal of Transparency from Candid. (formerly Guidestar) and 4-star rating by Charity Navigator, two highly trusted charity evaluators. That means our strategy, metrics, and financial data are all available for anyone to view. We’re proud to use these 3rd party assessment tools to share SRF’s story of impact and help supporters give with confidence that their donations are being wisely invested to advance research progress.

Meet the Scleroderma Research Foundation's Newest Staff Member

Please join the SRF in welcoming our new Development Database Manager, Ruben Cordoba. Ruben brings a strong analytical mindset and technical expertise to his role, along with a deep commitment to supporting the Scleroderma Research Foundation's mission. He joins our intentionally small but dedicated team who work hard to ensure every dollar invested in our work is maximized to advance research.

Ways to Give and Support Research

Donate Today / Employer Matching / Planned Giving