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September 22, 2023 | #1041 |
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| You can 'Give with Confidence' The National Scleroderma Foundation received a Four-Star Rating from Charity Navigator for the seventh year in a row! This rating designates the Foundation as an official “Give with Confidence” charity, which means you can give with the utmost trust. |
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| Ask the scleroderma experts about Pulmonary Arterial Hypertension The National Scleroderma Foundation has partnered with Inspire and the American Lung Association for "Ask the Expert" on Pulmonary Arterial Hypertension from Monday, Sept. 25 to Thursday, Sept. 28. Ask scleroderma experts, Kurt W. Prins, MD, PhD and Soumya Chatterjee MD, MS, FRCP, about Pulmonary Arterial Hypertension. Send your questions by Sept. 28. Start sending your questions now. |
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| Still time to make strides in the fight to cure scleroderma There are only two walks left in the 2023 Stepping Out to Cure Scleroderma walk season.Visit scleroderma.org/steppingout and help us fight to find a cure!
Last walks of the year:
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| 25th Anniversary – One moment at a time 2002 – Worldwide welcome
Technology advances allowed awareness to turn to the internet, so the chapters and support groups launched their web presence that year. |
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| Get connected to a clinical trial today Did you know individuals living with scleroderma, their caregivers and health care professionals have an easy and effective way to search and match to scleroderma clinical trials?
Now, through a partnership with Carebox and the Carebox Connect portal, all you have to do is complete a short, six-question questionnaire and you can instantly see which clinical trials are potentially relevant for you. |
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| National Scleroderma Conference content available on YouTube The 2023 National Scleroderma Conference content is now available on our YouTube channel! |
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| Mogil's Mobcast with Melanie Gornick On the latest episode of Mogil's Mobcast, Ann Mogilevsky talks with Melanie Gornick. In this episode, the pair discusses Melanie's journey with scleroderma and how she started a non-profit organization called Scleroderma Warriors. |
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| Webinar: Stem Cell Transplantation in Scleroderma The National Scleroderma Foundation will host Stem Cell Transplantation in Scleroderma webinar on Oct. 11, 3 p.m. ET. This session will focus on the evolution of stem cell therapy for scleroderma. How the therapy works, what is the eligibility criteria, what trials are currently available and is this the right path for you. Learn about these topics and much more with Dr. Dinesh Khanna. |
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ZOOM: Wednesday, Sept. 27, 7 p.m. ET
Please join us on Wednesday, Sept. 27 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. |
| ZOOM: Thursday, Sept. 28, 7 p.m. ET
The Caregivers Support Group will meet on Sept. 27 at 7 p.m. Eastern. For more information, email support group leader Debbie Haussler. |
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Teens and Parents Support Group ZOOM: Wednesday, Sept. 27, 6 p.m. MT
Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support group will have Teens& Parent Support Group meetings each month on the 4th Wednesday via Zoom. The group will be led by Debra Droux, Maria Tafoya, and Jackie Martinez. Email nmsclero@gmail.com or call 505-503-3545 to receive the Zoom meeting information. We ask that a parent or caregiver be present with their teen when the meeting starts. |
| The 20%: Males Living with Scleroderma
Support Group ZOOM: Wednesday, Sept. 27, 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. |
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Fibrosis Pulmonar en Esclerodermia ZOOM: 23 de septiembre, 2023, 11 a.m. ET
El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita cordialmente a nuestra charla virtual en conmemoración del Día Mundial de la Fibrosis Pulmonar. Acompáñenos mientras exploramos el tema "Fibrosis Pulmonar en Esclerodermia".
Únete desde cualquier lugar en el que te encuentres. Nuestra charla está diseñada para que puedas participar sin importar tu ubicación.
Fecha: 23 de septiembre, 2023
Hora: 11:00 am EST
Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com
A continuación, enlace para registrarse al evento
https://forms.gle/M1HnSmV64yHwVvi8A |
| The Rochester Patient Roundtable ZOOM: Saturday, October 7, 1 p.m. ET
The Rochester Scleroderma Support Group will be hosting the Rochester, NY Patient Roundtable on Saturday, Oct. 7, from 1-3 p.m. ET via Zoom. The roundtable will discuss vascular issues that impact individuals living with scleroderma. Michael York, MD, will be speaking at this event. All are welcome to attend this event. |
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