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SRFCURE
United States
Registrace 25. 06. 2010
The SRF is on a mission to cure scleroderma. And we're doing it by finding, funding and facilitating the most promising research available. We recruit the best scientific and clinical minds to investigate the causes, discover new treatments, and ultimately eradicate this disease. In short, curing scleroderma is our mission, and research is at the center of all we do.
The SRF is a 501(c)(3) nonprofit organization and is solely funded through private donations.
www.srfcure.org
The SRF is a 501(c)(3) nonprofit organization and is solely funded through private donations.
www.srfcure.org
The 2024 SRF Research Challenge, Featuring Dr. Ryan Flynn
Join the 2024 SRF Research Challenge to support research like Dr. Flynn's: bit.ly/srf-challenge-2024
Dr. Ryan Flynn (Harvard University, Boston Children's Hospital) shares information about his SRF-funded research project, Cell Surface GlycoRNAs
in Autoimmunity, and how it could help people living with scleroderma.
Your support of innovative research like Dr. Flynn's, and other projects funded by the SRF, helps advance our understanding of this disease. By joining this year's Research Challenge, you'll be a part of the next era of breakthroughs that could end scleroderma.
Will you help us accelerate the pace of research so that we can one day end this disease?
The best part is that when you make a gift to our Research Challenge, you’ll unlock a matching donation dollar-for-dollar*, thanks to the generosity of two families who, like you, are committed to finding a cure.
Double your impact today: bit.ly/srf-challenge-2024
P. S. Special thanks to our Research Challenge match donors-Board Members Luke Evnin (Chairman) and Deann Wright, and the Schimberg Family Foundation-for doubling the impact of your gift!
*Up to $75,000 through July 31, 2024.
Dr. Ryan Flynn (Harvard University, Boston Children's Hospital) shares information about his SRF-funded research project, Cell Surface GlycoRNAs
in Autoimmunity, and how it could help people living with scleroderma.
Your support of innovative research like Dr. Flynn's, and other projects funded by the SRF, helps advance our understanding of this disease. By joining this year's Research Challenge, you'll be a part of the next era of breakthroughs that could end scleroderma.
Will you help us accelerate the pace of research so that we can one day end this disease?
The best part is that when you make a gift to our Research Challenge, you’ll unlock a matching donation dollar-for-dollar*, thanks to the generosity of two families who, like you, are committed to finding a cure.
Double your impact today: bit.ly/srf-challenge-2024
P. S. Special thanks to our Research Challenge match donors-Board Members Luke Evnin (Chairman) and Deann Wright, and the Schimberg Family Foundation-for doubling the impact of your gift!
*Up to $75,000 through July 31, 2024.
zhlédnutí: 102
Video
SayScleroderma - Cynthia's Story
zhlédnutí 164Před měsícem
In this video, Cynthia W. opens up about her difficult experiences seeking care for scleroderma and highlights the crucial need for awareness and education about this disease. Thank you so much to Cynthia and her brother for making this project to spread the word about scleroderma. Learn more at srfcure.org
Patient Forum: Lifehacks from the Scleroderma Community (2024)
zhlédnutí 255Před 2 měsíci
Members of the scleroderma community share the things that help them manage living with scleroderma. Presented by Ile, Falguni, Amy, Grace, Tomisa, Greg, Helene, Sophie Anne, and Demi. This intermission session was originally presented on June 3, 2024, as part of the 3rd annual SRF Patient Forum, “Collaborating for a Cure.” Learn more at www.srfcure.org
Patient Forum: CAR T-Cell Therapy & Scleroderma - Today and Future (2024)
zhlédnutí 466Před 2 měsíci
These sessions will explore the historical work on immunological reset for treatment resistance, B cell depletion therapy alongside CAR T therapy, the use of natural killer cells engineered to target CD19, and precision immunotherapies. Presented by Peter Merkel, MD (Professor of Medicine and Epidemiology and Chief of the Division of Rheumatology, University of Pennsylvania School of Medicine) ...
Patient Forum: Scleroderma and Cancer: Implications for Cancer Screening & Therapy (2024)
zhlédnutí 163Před 2 měsíci
This session examines cancer screening recommendations for individuals with scleroderma. Topics include reviewing data linking cancer to scleroderma, discussing implications for cancer screening in patients with a recent scleroderma diagnosis and describing the challenges in cancer care in patients with scleroderma. Presented by Ami Shah, MD, MHS (Professor of Medicine and Director of the Divis...
Patient Forum: Stem Cell Transplant in Juvenile Scleroderma (2024)
zhlédnutí 98Před 2 měsíci
In this session, Dr. Torok will focus on Autologous Stem Cell Transplantation (ASCT) as a treatment for juvenile scleroderma and discuss the protocols and outcomes at the Pittsburgh Scleroderma Center. Presented by Kathryn Torok, MD (Director of the Pediatric Scleroderma Clinic, Pittsburgh Children's Hospital). This session was originally presented on June 3, 2024, as part of the 3rd annual SRF...
Patient Forum: Platform Trials: Accelerating Clinical Research in Scleroderma (2024)
zhlédnutí 137Před 2 měsíci
In this session, you'll learn more about platform trials and their role in accelerating clinical research in scleroderma. After covering the basics, you'll learn about CONQUEST, a highly innovative platform clinical trial. CONQUEST is designed to rapidly advance promising treatments for scleroderma and to identify agents that should progress from phase 2b to phase 3 clinical trials. Presented b...
Patient Forum: Heart Disease in Scleroderma (2024)
zhlédnutí 219Před 2 měsíci
In this session, Dr. Mukherjee explains cardiopulmonary manifestations in systemic sclerosis (SSc) and the impact on morbidity and mortality. She will define the role of multimodality imaging in the detection and classification of adverse cardiopulmonary phenotypes in SSc and propose a clinical algorithm that can lead to earlier diagnosis and improve clinical outcomes. Presented by Monica Mukhe...
Patient Forum: Non-Pharmacologic Management of Scleroderma (2024)
zhlédnutí 560Před 2 měsíci
SRF Board Members Susan Feniger and SRF Board Chair Luke Evnin, PhD, welcome attendees to the SRF Patient Forum, “Collaborating for a Cure,” on June 6, 2023. Dr. Shah will review symptomatic management of systemic sclerosis without medication including Raynaud's Phenomenon, digital ulcers, GI symptoms, joint pain, contractures, and fatigue. Presented by Ankoor Shah, MD (Associate Professor of M...
Scleroderma Awareness Month - Andrew's Story
zhlédnutí 143Před 2 měsíci
June is Scleroderma Awareness Month! Join us as we launch the #SayScleroderma campaign to bring attention to this disease, its complications, and the urgent need for research. Lack of awareness can lead to delays in treatments and diagnosis. But we won't accept that - by working together as a community, we can change the narrative and create real progress toward ultimately finding a cure for sc...
Dee's Journey with Scleroderma and PAH
zhlédnutí 730Před 6 měsíci
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, Dee (who was diagnosed with scleroderma in 2012) shares about her journey with this disease and one of its complications, another rare disease called pulmonary arterial hypertension (PAH). "Awa...
Dr. Chang Talks Making an Impact through Research
zhlédnutí 132Před 8 měsíci
SRF-Funded investigator, Dr. Howard Chang of Stanford University, shares his perspective on making an impact through scleroderma research. We won’t stop until we find a cure, and like Dr. Chang says, we can't do this work without your help. Please join us in advancing the most promising research for a cure by making a gift today. Donate now: bit.ly/srf-yearEnd2023
Join Us for CCHC 2023, a Tribute to Bob Saget
zhlédnutí 155Před 10 měsíci
Please join us in honoring Bob Saget at the Scleroderma Research Foundation’s (SRF) signature fundraiser, Cool Comedy • Hot Cuisine. A part of the 19th Annual New York Comedy Festival, this special evening pays tribute to Bob, a long-time dedicated SRF Board Member. Visit: srfcure.org/events/cool-comedy-hot-cuisine/ Bob's involvement with the SRF began in 1991 through this very event-first as a...
"Angel Applicant"-An Excerpt from a New Scleroderma Documentary
zhlédnutí 1KPřed rokem
When Ken first studied Swiss-German artist Paul Klee in art school, he had no idea that he would be diagnosed in 2000 with the same disease Klee suffered from: scleroderma. “After learning that Klee also suffered from the same progressive form, diffuse cutaneous systemic sclerosis, I became really inspired by how it propelled his creativity,” Ken says. “Often feeling powerless to the disease my...
Developing personalized medicine strategies in scleroderma
zhlédnutí 241Před rokem
Dr. Ami Shah discusses how phenotype combined with other measures from research studies like blood biomarkers may better predict how someone progresses with the disease and how they may respond to a specific therapy. Presented by Ami Shah, MD, MHS (Associate Professor of Medicine and Director of the Division of Rheumatology, Johns Hopkins University School of Medicine).
Understanding Scleroderma Vascular Biology
zhlédnutí 697Před rokem
Understanding Scleroderma Vascular Biology
How to Advocate for Yourself: Making the most of your doctor's visits
zhlédnutí 187Před rokem
How to Advocate for Yourself: Making the most of your doctor's visits
Welcome & Scleroderma 101: Understanding diagnosis and treatment
zhlédnutí 2,6KPřed rokem
Welcome & Scleroderma 101: Understanding diagnosis and treatment
Essentials of Clinical Trials: A Patient’s Guide
zhlédnutí 340Před rokem
Essentials of Clinical Trials: A Patient’s Guide
Cure Crew Advocate Spotlight: Greg Cohen
zhlédnutí 146Před rokem
Cure Crew Advocate Spotlight: Greg Cohen
Juvenile Onset Systemic Scleroderma: What is it and How is it Evaluated and Treated
zhlédnutí 195Před rokem
Juvenile Onset Systemic Scleroderma: What is it and How is it Evaluated and Treated
Behind the Mystery, featuring the Scleroderma Research Foundation
zhlédnutí 2,2KPřed rokem
Behind the Mystery, featuring the Scleroderma Research Foundation
Dr. Whitfield on the Bright Horizon of Scleroderma Research
zhlédnutí 366Před rokem
Dr. Whitfield on the Bright Horizon of Scleroderma Research
Bob Saget Shares How Scleroderma Affected His Sister
zhlédnutí 1,1KPřed rokem
Bob Saget Shares How Scleroderma Affected His Sister
Dr. Torok Shares How You Can Help Advance Scleroderma Research
zhlédnutí 146Před rokem
Dr. Torok Shares How You Can Help Advance Scleroderma Research
Webinar: Understanding Pulmonary Arterial Hypertension (PAH), with Dr. Roham Zamanian (2022)
zhlédnutí 1,6KPřed rokem
Webinar: Understanding Pulmonary Arterial Hypertension (PAH), with Dr. Roham Zamanian (2022)
A Tribute to Bob Saget: Laughter and Scleroderma
zhlédnutí 4,5KPřed rokem
A Tribute to Bob Saget: Laughter and Scleroderma
2022 SRF Research Challenge: The Scleroderma Twins Study with Dr. Howard Chang
zhlédnutí 315Před 2 lety
2022 SRF Research Challenge: The Scleroderma Twins Study with Dr. Howard Chang
I hope we can get better treatments (more accessible and not only for diffuse Scleroderma but for all the types of antibodies with Scleroderma), and something directly for our skin, to stop the skin tightening, and hopefully a cure. 🙏🏽🕯️💗
Thanks for your comment, Lilly. The Scleroderma Research Foundation is committed to helping advance research that can improve treatments and bring us closer to a cure for scleroderma.
@@SRFCURE Thank you 🙏🏼 hopefully soon. This is such a really really a cruel disease. God bless all the scientifics doing research. Hopefully we can get treatments that really stop it. And can find the cause. 🙏🏼 Thank you. 💗
Thankou... I have Scleroderma😢
how to secure life any medican or any other thing
Recently, I visited Your CZcams channel and I found some problems. I think and believe that if you can fix that problem, your channel will grow very gradually. Then your channel possible to grow. So are you interested
Your CZcams video content is so good. However the video does not get many views. Because your CZcams channel has some problems. Do you want to know about the problems?
It's very interesting. I'd like to know if a patient has Scleroderma but also (very) different medical conditions that creates sometimes confussion. It's difficult because we have to be fight more to be believed by doctors because they think we can't have more autoimmune, hormonal conditions at the same time. About Scleroderma it's really shocking the skin involvement, it's scary. I hope we can have a medication that can control and stop the skin tightening please. I'd like to participate in a clinical trial. Hopefully someday , to help me and more people dealing with this disease, and hopefully someday a cure can be found. Congratulations for doing this information conferences. ❤
Scleroderma is a terrible disease. 😢 Hope we can get better treatments, 💊💉 medications and hopefully a cure! 🙏🏻
What causes systemic sclerosis? I have been going crazy researching and trying to find answers. It’s so unfair after all this time and still no cause and cure!
Can the nails capillaries recover if you start early medication or they will stay forever ?
I’m so glad that I went as soon as I got some symptoms I was very president and I got diagnosed just few months after my symptoms and started treatment 🙏🏻 I pray to God that helped me to find this early and hoping for a better outcome. Thank you for this information.
You see, I find a whole bunch of information of systematic Scleroderma. And just in general. There is 0 information on a person who's been abused for the first 14 years of their life. There is no information I can find for people like me. Who got it through being abused through belts and other forms. Where can I find that information
or could it be a false positive for the the anti-SCL-70 in the case of someone showing limited signs
What a wonderful man, may he rest in peace ❤🕊️🙏🏻
What other enviromental factors? Vaccines of any kind?
Thank you Sharon and may you rest in peace ! You made a difference indeed! ♥️🙏
20 years and still nothing that has helped me. It breaks my heart that today 23 years later I suffer with an illness and there has been nothing to help. My body is no longer my body and I am unrecognizable. My doctors really no nothing about Scleroderma and sadly dedication on their part is just not there.
Hi @athenamarieroberts, thank you for sharing your perspective. So sorry to hear how difficult this has been for you. We remain committed to advancing research so that we can find better treatments and ultimately a cure for scleroderma.
When are we going to have a medication for our skin? To control or to stop the skin fibrosis, tightening. This is one of the most cruel and weird of the autoimmune diseases. A disease that turns into mummies. Please, scientists , pharmaceuticals, give us hope. Help us!! 🙏🏼🙏🏼
When are we going to have a medication for our skin? To control or to stop the skin fibrosis, tightening. This is one of the most cruel and weird of the autoimmune diseases. A disease that turns into mummies. Please, scientists, give us hope. Help us!! 🙏🏼🙏🏼
Excellent disclosure of information for me as I am experiencing sever gastro problems as the result of Scleroderma. Thank you for this.
I'm so tired of living with Raynaud's it's miserable... I have primary Raynaud's, I don't have any autoimmune issues just the Raynaud's which sucks !! I pray they find a cure for this and better treatments, it's debilitating
I get this for DAYS TOO
Thank you for sharing ❤
Thank you for spreading awareness Dee❤
Beautiful video ❤
Praying for a cure sharing for awareness 🙏🙏
Great information thank you
I have ssc.plz advise
🙏
What are your thoughts about trauma aggravating limited systemic sclerosis? Your video discussed the duration of onset of Raynauds/ limited SSc being years. In this case, the patient fell backward onto their hands, causing a fracture in the left pinky (55yr fe). The patient developed Raynauds, finger swelling, and ulcers in 3 months (extreme swelling/ulcers in the right index finger to the point there was concern of losing the finger to gangrene). The first signs of skin tightening and hardening were on the tip of the fractured left pinky finger.
Scientists, pharmaceuticals please could you create a medication for our skin? To stop the collagen over production that causes hardening of the skin, and the fibrosis to our body. Please 🙏🏼 😢 👩🏽⚕️👨🏼⚕️🏥🙏🏼⚕️🕯️☀️ 💊💉 🙏🏽
Scientists, pharmaceutical please could you create a medication for our skin? To stop the collagen over production that causes hardening of the skin. Please !!! 😢 👩🏽⚕️👨🏼⚕️🏥🙏🏼⚕️🕯️☀️ 💊💉
هل يوجد نسخة مترجمة
I hope we can get medication for the skin, collagen over production. 😢 there's nothing yet for this.
Hey lilly i just read some of the comments of yours in diff videos. I just wanted to know how are you doing.
@@ValKyrie-h Hi,do you scleroderma ?
@@lillyrocks2011 ya i was diagnosed 4 minth ago with scl 70 strongly positive
@@ValKyrie-h I'm sorry that you have scleroderma. I have limited scleroderma. I was without diagnosis years,Drs telling me that's nothing and silly things. My skin feels tight sometimes, and it's shiny in some areas, very dry, etc. medication help somewhat. That's not my only symptom... It's very sad there's no medication for this. I hope more research can be done.
@@lillyrocks2011 be strong and have faith .I know this isn’t curable but i have seen miracles where incurable diseases had been cured. I will start improving my lifestyle eating healthy,drinking lots of water and exercising i will try every possible things i can do for my self and you should too. Take care of yourself
It's an awful disease! 😢I hope a medication to stop the collagen can be found. 🙏🏽🕯️
I presume that due to being the main organisation that conducts research and is the central hub for collective networking and information that it is already aware of this research and has likely decided against it, but on the off chance it hasn’t, and that someone here is linked to the scleroderma foundation, or is a specialist in this video I ask this.. Has the organisation or anyone in it done any research or treatment on human subjects (in vivo) on a protein called caveolin-1? From what I can tell caveolin-1 is a protein produced by the cav1 gene and is responsible for a lot of functions and regulations but abnormalities can cause inflammation and a lack of adipose fat. A deficiency or mutation can cause a lack of this protein and restoring caveolin-1 by use of a peptide or replacing the CAV1 gene if possible might be the key to treating or preventing pulmonary fibrosis or ILD. I’m looking into this and need to get a test done but does anyone here know if this organisation or any of the specialists have looked into this?
Remembering Bob Saget with gratitude and love, always. 😇❤
Thanks for sharing! This helps me understand what is going on in my body, with my complex diseases!
Good movie. I'm sure it was a mixture of hard & encouraging to do but peaceful in the end. Thank you.
I’ve just been diagnosed and found msc’s. Diseases like ms, cardiovascular diseases, pulmonary fibrosis, kidney disease, gut micro biome, etc are all being successfully treated with this in Panama & Mexico by US phd’s (see Dr. Caplan & Dr. Riordan) Are we looking at mesenchymal stem cell treatment (early IV infusion)? Immunomodulatory effects and anti inflammatory. Must currently go outside the USA God bless us all🙏
Has anyone looked at mesenchymal stem cell IV infusion outside the USA as a treatment? It’s being given for ms, fibrosis disorders, cardiovascular disorders, etc…it’s just not fda approved in high doses in the USA yet. Look at RMI in Dallas and stem cell institute in Panama. I’ve just been diagnosed and almost immediately went to have msc IV infusion of 300m cells. Not controversial stem cells. Hoping it helps me and others. Do the research…it’s real. God be with us all🙏
My father had systemic scleroderma for 20yrs...diagnosed. it probably started a few years before that but nobody knew what was wrong. He eventually had a double lung transplant (1st at Stanford hospital), 2 bouts of cancer and a total laryngectomy. I remember explaining to my own doctors what is was in my family history. Now, most doctors I've talk to know what it is. I wish I could have convinced my father to go to one of these events. He passed 6yrs ago now. I was his caregiver also.
Promo'SM 👌
Can diagnosis of Jackhammer Esophagus as Dx by Manometry as well as experiencing dysphagia be swallowing difficulties symptom catagory?
My dear mother didn’t make it to remission with this ugly disease! Everyday I get lost in the details of why isn’t there a cure and what exactly is this disease! Why did it happen to my mother! Her life was cut too soon! I panic thinking is this heredity… just a world full of limited answers! I’m grateful for this channel and for every researcher who has dedicated their life to finding a cure / new treatments! Thank you!
Very good movie made me laugh and cry😂😢
The best doctor we have met! Dr. T
I watched this movie when i was a teenanger, now i have found it again, it is difficult to see this sad case is not for watch frequently because its quite sad and depressing, i was shocked about that disease i didnt know on the 90s, and this woman fading like a flower, her face her stiff body killing her willpower, but we have to know we all will die and we need to fight the best we can even if we have physical pains, but when we will have to let it go "what you know", remember the good things of our lifes, that we enjoyed.
My friend (male 29) is going through a severe case of systemic sclerosis, it’s very scary, he was a young fit healthy male this time last year , now his skin is so tight can cannot walk properly, there isn’t much out there / specialist in Australia, can anyone help / recommend anything , this is a very serious case , his family have been taking to too whatever specialist they can but aren’t been given much information, please help
❤❤❤
Big heart ❤️ I hope he’s and very good place 🙏🏻❤️I have scleroderma I will watch he’s movie 🫶
speaking of big heart ? bob's movie is callesd for hope i watch it on youtube