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| Foundation leadership discusses 2024 and beyond Our Foundation volunteers and leadership recently gathered in New Orleans for connection, collaboration, strategic planning and professional development – all in an effort to help develop the resources you need to thrive in your scleroderma journey. |
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| Just released: Julia's story There are coincidences and then there is meant to be. One recent collaboration had everyone involved feeling those “meant to be” vibes. The Foundation had the opportunity to partner with Horizon Therapeutics’ #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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| 25th Anniversary – One moment at a time 2008 – Awareness takes a front seat
The National Scleroderma Foundation co-sponsored a NASCAR Bush Series vehicle in 2008. The Foundation logo appeared on the team’s car, uniforms, crew race-day T-shirts and trailer.
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| Have a birthday coming up? Celebrate your special day by starting a birthday fundraiser on Facebook to raise awareness and funds to support the scleroderma community! |
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| Find a clinical trial right 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. 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. |
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| Quarterly Stakeholder Update Oct. 25 Attend the upcoming quarterly stakeholder update presented by CEO Mary J. Wheatley, IOM, CAE on Oct. 25 at 3 p.m. ET. 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. |
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| Webinar: 'Living with an Interstitial Lung Disease' is next week! Next week, the American Lung Association, with support from Boehringer Ingelheim, and in partnership with the National Scleroderma Foundation, will hold a patient-focused webinar geared towards patients who have been living with an ILD.
Are you living with interstitial lung disease (ILD)? Managing ILD, like pulmonary fibrosis, can be both challenging and overwhelming. The webinar will be held Oct. 24, at 3 p.m. ET. Hear from Erica Farrand, MD, a pulmonologist with the University of California, San Francisco, as well as Demi, an individual living with ILD. |
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| Don't miss these two chapter education events on October 28th |
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| Mogil's Mobcast with Elaine Furst On the recent episode, Ann Mogilevsky speaks with Elaine Furst, RN, a nurse educator with 35 years of experience in the nursing field. The episode discusses sexuality, sensuality, and how it affects people with a chronic illness. |
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| ACR Podcast: How do you feel about your fingers? Dr. John D. Pauling joins the ACR Journals on Air Podcast to discuss his Arthritis Care & Research published study on Raynaud’s phenomenon and how his ASRAP questionnaire, developed with extensive systemic sclerosis patient input, helped to scientifically validate the patient’s lived experience. |
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| Webinar: Tune in to Lung Health – Nov. 4, 2023 Join the National Scleroderma Foundation and Lung & You for a wonderful webinar, "Tune in to Lung Health," that 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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Cuidado Dental en Esclerodermia ZOOM: 21 de octubre, 2023
El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia le extiende una cordial invitación a nuestra charla virtual vía Zoom en conmemoración del Mes de la Higiene Dental. Acompáñenos mientras exploramos el importante tema “Cuidado Dental en Esclerodermia”.
Cuándo: 21 oct 2023 11:00 a. m. Hora del este (EE. UU. y Canadá)
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| ZOOM: Wednesday, Oct. 25, 7 p.m. ET
Please join us on Wednesday, Oct. 25 at 7 p.m. ET for our support group meeting for people living with scleroderma who identify as members of the LGBTQ+ community.
Email lgbtq@scleroderma.org for the meeting link. Any questions, please email Caryn Anatriello, Manager of Advocacy and Support. |
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The 20%: Males Living with Scleroderma Support Group ZOOM: Wednesday, Oct. 25 7 p.m. ET
Scleroderma diagnoses are less common among males. In fact, only 20% of individuals living with scleroderma are male. We have designed a support group, especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m. ET. |
| ZOOM: Thursday, Oct. 26, 7 p.m. ET
The Caregivers Support Group will meet on Oct. 26 at 7 p.m. Eastern. For more information, email support group leader Debbie Haussler. |
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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, alippincott@scleroderma.org. |
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| This week in scleroderma news:
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