The Scleroderma Research Foundation Monthly eNewsletter | |
SRF-Funded Researcher Sheds Light on Why Women Are More Likely to Develop Autoimmune Diseases | |
SRF-funded researcher Dr. Howard Chang and his collaborators have made a breakthrough discovery that sheds light on why women are more likely than men to develop certain autoimmune diseases, like lupus and scleroderma. The Scleroderma Research Foundation (SRF) is the primary sponsor of this study, a major milestone in the organization's near decade-long concentrated effort to understand female-biased autoimmunity, a commitment that has been spearheaded by Dr. Chang and his team.
Women account for nearly 80% of all cases of autoimmune disease, a category that includes scleroderma, lupus, rheumatoid arthritis, and Sjogren's syndrome. In this study published in the journal Cell, Dr. Chang, an investigator at Stanford University and the Howard Hughes Medical Institute, and his collaborators propose an explanation for the higher prevalence of autoimmune diseases in women compared to men.
They attribute it to the presence of a molecule called Xist that is responsible for silencing one X chromosome in every female cell. Xist and its associated proteins may sometimes be released from damaged cells and may, in certain women, activate the immune system, leading to autoimmune disease. Because only women make the molecule called Xist, this process does not happen in males.
Although Xist is not likely the sole cause of autoimmunity, the findings suggest the potential for developing new treatments targeting the specific immune activation it can provoke instead of using broadly immunosuppressive drugs.
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Read the Press on This Groundbreaking Study | | |
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The SRF extends its heartfelt congratulations to Dr. Chang, first author Dr. Diana Dou, and SRF-funded collaborators Dr. Ami Shah (Johns Hopkins), Drs. Lorinda Chung and David Fiorentino (Stanford), as well as additional research team members at the KTH Royal Institute of Technology (Stockholm), the Swiss Federal Institute of Technology, JHU, and Stanford.
We are also indebted to the Scleroderma Research Foundation's donors. Your generous support enables us to invest in groundbreaking work like this project. Thank you!
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Save the Date: This Year's Patient Forum Is on June 3, 2024! | |
Mark your calendar, because you don't want to miss this. The 3rd Annual SRF Patient Forum, "Collaborating for a Cure," is a FREE virtual event for people living with scleroderma and those who care for them. You'll hear from leaders in the field of scleroderma research and have the chance to ask your questions directly.
Can't wait till June? Check out the sessions from last year's event today. From scleroderma basics to understanding clinical trials, there's lots of great information to dive into right now.
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Dee Shares Her Journey with Scleroderma and PAH for Rare Disease Awareness Month | |
February is Rare Disease Awareness Month. It's an opportunity for us to come together and raise awareness about what it means to live with a rare disease like #scleroderma. To kick things off this month on social media, Dee (who was diagnosed with scleroderma in 2012) shared about her journey with this disease and one of its complications, another rare disease called pulmonary arterial hypertension (PAH).
This video was produced by Project Scleroderma in collaboration with our team here at the SRF.
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It's Rare Disease Day Tomorrow—Here's a Couple Highlights of Resources and Ways You Can participate | |
The rarest day of the year is tomorrow—February 29th is both a leap day and this year's Rare Disease Day! Help us raise awareness in the coming days of rare diseases, like scleroderma.
Scleroderma is one of over 6,000+ diseases identified as rare. Scleroderma, or systemic sclerosis, affects approximately 100,000 people in the United States and can strike women, men, and children of all ages.
The SRF stands with the rare disease community because being rare does not mean being alone. There are 300 million people worldwide living with a rare disease, which is 5% of the worldwide population.
Let's keep scleroderma and rare diseases in the public eye. Share information about what living with a rare disease is like, and make a difference.
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Virtual Meeting: The FDA is hosting a virtual public meeting for Rare Disease Day on March 1, 2024. They'll discuss topics like clinical trials, initiatives to advance medical product development, and more. | |  |
Updates on Rare Disease Drug Approvals: CDER shares a full list of 2023 rare disease drug approvals. | |
Bet on a Cure: A Casino Night to Raise Funds for Research | For the 14th year in a row, Cure Crew Members and siblings Joni Kosmach, Diane Schumacher, Annette Michaelsen, and Sandy Ribich (pictured above l – r) hosted their 14th annual Bet on a Cure casino night event in Spring, Texas on February 24, which raised an amazing $26K+ for scleroderma research. | |
This annual event is held each year in memory of their mother, Joan Kosmach, who passed away in 1995 due to complications of scleroderma. Ever since then—for 29 years and counting—her children and their friends and families have committed themselves to helping raise much-needed funds and awareness, with the goal of helping the SRF find a cure for this difficult disease. To date, the Kosmach Family and their friends have raised over $600,000 for scleroderma research!
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Friends like you are at the core of everything we’re able to do at the SRF. Your support makes it possible for us to aggressively drive scientific research forward so that we will one day have a world free from scleroderma.
That’s why we’re excited to offer an opportunity to extend your support for scleroderma research while also taking care of the people and causes you love most by creating an estate plan using FreeWill. The service is 100% free of charge whether you choose to include a gift to the SRF or not, and offers an easy-to-use online tool that helps you make your estate plans without a hassle.
Creating your will is a simple gesture that reflects your values and ensures your wishes are honored. While there's no obligation, including a gift to the SRF in your estate plan is also a powerful way to make a lasting impact on people living with scleroderma. Donors who include SRF in their will become members of our Sharon Monsky Legacy Society, which celebrates donors who have chosen to support scleroderma research with a gift beyond their lifetime.
No matter what age you are, your lifetime legacy can start today for you and your loved ones. And together, we will continue to drive research breakthroughs and provide hope for the scleroderma community.
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Aneila Shares Her Story for Raynaud's Awareness Month | |
Nearly 90% of those with scleroderma have Raynaud’s symptoms. This is why Raynaud's can be a “red flag” that helps lead to diagnosis and treatment of scleroderma. And for Aneila, dx 2021, this was exactly the case. “Raynaud’s was actually my first symptom,” she shared with us.
After that, she started experiencing skin discoloration, extreme fatigue, and major pain in her muscles and knees. Learn more in the full story.
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Research is at the center of all we do to find a cure. | | | | |
