|
|
|
| Check out the recap of our Quarterly Stakeholder Update Did you miss our Quarterly Stakeholder Update by CEO Mary J. Wheatley, IOM, CAE? 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 on our YouTube channel. |
|
|---|
|
|
| 25th Anniversary - One moment at a time FEBRUARY 1998 - It's official
A merger was signed in 1998, to create the Scleroderma Foundation, an organization dedicated to patient support, education and the advancement of medical research. That year kicked off exciting advances in research and expanded awareness efforts. Although scleroderma, as it remains today, is a rare disease with no cure, the Foundation began to broaden the nation’s understanding of the disease and the importance of the lives of those battling scleroderma. |
|
|---|
|
|
| Get some face time with local lawmakers Did you know that federal lawmakers are back in their home states and districts until September 4th? That means it's time for our scleroderma community to mobilize and get some face time with members of Congress. |
|
|---|
|
|
| Looking for a support group? Are you looking for support? Join one of our support groups nationwide. Find a group of individuals who understand your journey with scleroderma. |
|
|---|
|
|
| Webinar: Breathing better with supplemental oxygen ZOOM: Wednesday, September 13, Noon CT
Interstitial Lung Disease Day is September 13, and the Pulmonary Fibrosis Foundation will host the "Breathing Better with Supplemental Oxygen" webinar. This one-hour webinar presentation will discuss why oxygen is a physiological problem with interstitial lung disease and why supplemental oxygen is recommended. The webinar will include important info about portable oxygen containers, how to get involved in oxygen advocacy initiatives, and where to find helpful information and resources. |
|
|---|
|
|
| Interested in watching Conference content? Did you attend the 2023 National Scleroderma Conference and want to rewatch content? If so, you have 60 days to access sessions and slides after the conference via the Airmeet platform. Please email info@scleroderma.org if you are unable to find your unique login link. |
|
|---|
|
|
| Mogil's Mobcast with Dr. Michael Hughes On the latest episode of Mogil's Mobcast, Ann Mogilevsky talks with Dr. Michael Hughes. The episode covers scleroderma's effect on the kidneys and neurological problems and neuromuscular manifestations associated with scleroderma. |
|
|---|
|
|
| Scleroderma research grant applications due Sept. 15 Are you currently working on research that aims to discover the cause, understand the mechanism, and overcome scleroderma forever?
The National Scleroderma Foundation provides funding for New and Established Investigators based on investigator-directed topics, and the grant cycle is nearing completion.
Funding opportunities are available for early career and established investigators, and applications are due by September 15, 2023. |
|
|---|
|
|
| Global Webinar: Advances in Scleroderma Research The global community of scleroderma research scientists will come together at the next Advances in Scleroderma Research – Global Webinar at 9 a.m., ET, Friday, September 15, to share and discuss the latest breakthroughs from the field. The webinar is open to all interested scleroderma researchers, including students and trainees. |
|
|---|
|
|
|
New support groups coming to Indiana and North Carolina New in-person support groups will begin soon in Indianapolis, Indiana and Greensboro/Durham, North Carolina. If you would like more information, please email info@scleroderma.org and indicate in which city you are located. |
| ZOOM: Sunday, September 10, 4 p.m. ET
The BIPOC (Black, Indigenous, and People of Color) Support Group will meet on Sunday, September 10 from 4 - 5:30 p.m. Eastern. The group will will discuss mental health and awareness in an open discussion. |
|
|---|
|
|
Parents of Children with Scleroderma Support Group ZOOM: Wednesday, September, 3 p.m. ET
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 even months (e.g., June, August, etc.) from 7:30 - 9 p.m., and the first Wednesday of odd months (e.g., July, September, etc.) from 3 - 4:30 p.m. Email Pamela Pour for the meeting information. |
| |
|---|
|
|
| This week in scleroderma news:
|
|
|---|
|
|
|
|
|
|
|
|
|
If you no longer wish to receive this weekly message from the National Scleroderma Foundation, you may unsubscribe. |
|
|---|
|
|
