| eNews: October Edition |
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If you missed Cool Comedy • Hot Cuisine, it’s online now through November 1, 2021, only.
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On Sunday, October 17th, Cool Comedy • Hot Cuisine helped raise awareness and advance scleroderma research—because of YOUR support. On behalf of everyone at the Scleroderma Research Foundation and hosts Bob Saget and Susan Feniger, thank you for such an incredible event! Together, we reached a global audience and raised $700,000—all directed towards vital scleroderma research.
There's still time to watch this incredible show on our YouTube channel, so don't miss out!
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Thank You to Our Generous Sponsors |
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Event Sponsor
Luke Evnin, PhD and Deann Wright
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Challenge Sponsors
Anthony and Judy Evnin
Violetta and Andrew Merin
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Richard and Nancy Robbins
Max, Samantha, Montana and Mark Scher
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Barrie Bazarsky
Anthony and Judy Evnin
Jeffrey Gevirtz, MD
Rhonda Mace
Dan and Jayna Schimberg
Diane Kosmach and Michael Schumacher
Luke Evnin, PhD and Deann Wright
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SRF Scientific Advisor Opens the Door for Life-Changing Treatments |
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The SRF's Scientific Advisory Board member, Daniel Kastner, MD, PhD, shares his approach to deepening the understanding of autoinflammatory diseases in a story published in the journal, Science.
"Autoinflammatory diseases may […] yield insight into the organization of the immune system by revealing 'chokepoints,' or weak links that can fail and lead to illness,” suggests Kastner, who until last month served as Scientific Director of the National Human Genome Research Institute (NHGRI). Through years of exploring these immune system “chokepoints”, Kastner and his research group discovered thirteen novel autoinflammatory diseases and identified targeted treatments for a number of them.
In addition to his research on autoinflammatory disorders, Dr. Kastner plays a leadership role in two SRF-funded genomics research projects: the Juvenile Scleroderma Project and the GRASP Project (Genome Research in African American Scleroderma Patients), both of which aim to identify genetic contributions to the onset and severity of scleroderma.
Dr. Kastner serves on the SRF's Scientific Advisory Board, along with some of the world’s most honored and distinguished scientists, who give their time and insights freely to ensure that the SRF’s research program remains laser-focused on the highest quality, most promising scleroderma research.
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"FDA Grants Orphan Drug Status to Cudetaxestat" |
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"Cudetaxestat, a potential anti-scarring medication, has been granted orphan drug status by the U.S. Food and Drug Administration (FDA) for the treatment of scleroderma…Orphan drug status provides companies with incentives to support the development of medicines that might treat rare conditions…
Also known as BLD-0409, Cudetaxestat is an oral, small molecule that works by inhibiting autotaxin, an enzyme involved in the production of a lipid (fat) signaling molecule, LPA, in a reversible manner. Autotaxin has been shown to promote fibrosis (scarring), and its excessive activity and levels have been observed in various fibrotic diseases in response to cell or tissue damage." Scleroderma News
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Supporting the SRF as a Federal Employee or Retiree |
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The Combined Federal Campaign is the official workplace giving campaign for federal employees and retirees. This year, the CFC celebrates its 60th anniversary. Since its inception, the CFC has raised more than $8.5 billion for charities and people in need. As we recover from the challenges of the past year and meet the new challenges of 2021 and beyond, CFC pledges make a real and meaningful difference to a countless number of individuals throughout our communities, our nation, and the world.
If you are a federal employee or retiree, please consider selecting the Scleroderma Research Foundation to be the recipient of your support. Our CFC number is #11847 and our Tax ID is #68-0087234.
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Almost 24 Years of Living with Scleroderma |
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“I learned the word scleroderma at the age of 18 when a rheumatologist explained why my hands were puffy and itchy,” Patty says. “I saw so many doctors during the beginning of the diagnosis.” Nearly 24 years after diagnosis, Patty shares her experience living with scleroderma. |
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Coming Soon: Pulmonary Hypertension Awareness Month |
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November is Pulmonary Hypertension (PH) Awareness Month and the SRF will be sharing resources, facts, and stories about PH to raise awareness of this disease. PH affects up to 40% of people living with scleroderma.
Do you have a story of how PH impacts your life? Please reach out and share your story! Contact our Director of Community Engagement, Gloria Blecha, at [email protected]
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