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| This year, the National Scleroderma Foundation celebrates 25 years of advancing medical research, promoting disease awareness, and providing support and education to people with scleroderma, their families and support networks.
We know that without our amazing scleroderma community and supporters like you, none of this would be possible. So, in honor of our 25th Anniversary, we invite you to join us as we look back at how we got where we are today and look ahead to where we're going in 2024 and beyond. |
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| The Foundation recently had the opportunity to partner with Amgen's #RAREis program, Sing Me A Story and Ashley Barron to bring a once-in-a-lifetime experience to a very special child living with juvenile systemic scleroderma. The result is an extraordinary musical performance that has a very special and rare backstory. |
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| 2024 National Scleroderma Conference call for presenters |
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| 25th Anniversary – One moment at a time 2009 – Getting to the heart of scleroderma
An “Echo Campaign” launched in 2009 to inform medical professionals of the importance of echocardiogram screening for people living with scleroderma. It’s the first-line screening test to determine if a person with systemic sclerosis has developed pulmonary arterial disease hypertension. The campaign featured its own microsite on the internet and introduced a medical journal about PAH-related research, called Scleroderma Spectrum.
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| Help generate more awareness of scleroderma One very important pillar of the Foundation's mission is to "promote disease awareness." Well, what if we told you that you are the key to achieving that goal? After all, you are not invisible, and your voice deserves to be heard. All you have to do is engage on social media – we'll provide the posts, information and videos you need to make sure more people know about the disease you are fighting – all you have to do is share them. Connect with us on social today to start spreading the word.
Facebook | Twitter | Instagram | LinkedIn | YouTube |
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| Clinical trials just became simplier to join Our partnership with Carebox and the Carebox Connect portal allows you to complete a short, six-question questionnaire and instantly see which clinical trials are potentially relevant for you. Are you looking for a clinical trial suited for you? Joining scleroderma clinical trials just became easier and more efficient for individuals living with scleroderma, their caregivers and health care professionals. |
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| New video alert: Stem Cell Transplant in Systemic Sclerosis webinar Interested in learning more about Stem Cell Transplants? Check out our recent Stem Cell Transplant in Systemic Sclerosis webinar with Dinesh Khanna, MD, MS. You can watch the YouTube video now on our channel. |
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| Watch our Quarterly Stakeholder Update on YouTube Did you miss our Quarterly Stakeholder Update by CEO Mary J. Wheatley, IOM, CAE? You can watch the recording now at our YouTube channel. Learn about progress in our exciting work to strengthen our organization and build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding. You can watch the recording now at our YouTube channel. |
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| Tomorrow: 2 chapter education events on October 28th |
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| 'Tune in to Lung Health' Webinar coming soon! Next week, the National Scleroderma Foundation and Lung & You will host "Tune in to Lung Health" webinar on Nov. 4, 2023 at 3 p.m. Eastern. The webinar will discuss the benefits of breathing exercises in people living with ILD. Four-time world series champion, New York Yankees legend, and Latin Grammy nominee Bernie Williams will speak on how music and breathing may help people cope with emotional and physical burdens. |
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Scleroderma Young Adults Seeking Connection (SYNC) Support Group ZOOM: Friday, Oct. 27, 7 p.m. ET
The SYNC support group will meet on Oct. 27. If you are interested in joining, please email Amanda Lippincott. |
| Parents of Children Living with Scleroderma Support Group ZOOM: Wednesday, Nov. 1, 7:30 p.m. Eastern
If you care for a child living with scleroderma, do not miss the Parents of Children with Scleroderma Online Support Group! The group covers various topics to help parents navigate caring for children with scleroderma and finding support. The group meets virtually via Zoom on the first Wednesday of the month from 7:30 - 9 p.m. Email Pamela Pour for the meeting information.
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Black, Indigenous, People of Color (BIPOC) Support Group ZOOM: Sunday, Nov. 12, 4 p.m. ET
The BIPOC (Black, Indigenous, and People of Color) Support Group will meet on Sunday, Nov. 12 from 4 - 5:30 p.m. Eastern. The group will will discuss "Grief and Loss" during the session. The meeting will consist of Part 1: National Staff Updates BIPOC, and Part 2: Open Discussion - Grief and Loss. If you have any questions, please contact Marilyn Sibley or Zynovia Hetherinton. |
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| This week in scleroderma news:
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