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| Reminder: Register for the Aug. 23 quarterly stakeholder update Attend the upcoming quarterly stakeholder update presented by CEO Mary J. Wheatley, IOM, CAE on August 23 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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| Get involved: Start a walk in your area Would you like to start a walk in your area? Contact the National Office. We would love to hear about your community and the need for a potential walk. Let's take one step closer to finding a cure together. |
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| Double or triple your giving impact! Did you know your donation to the Foundation could be doubled or even tripled?
Use our matching gift tool to find out if your employer has a matching gift or workplace giving program that will supplement your gift to the Foundation and multiply your impact. |
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| Webinar: Breathing better with supplemental oxygen ZOOM: Wednesday, September 13, Noon CT
On Interstitial Lung Disease Day, September 13, 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 (ILD) 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. |
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| Only 30 more days to view all recorded Conference sessions on Airmeet Don’t forget: All 2023 National Scleroderma Conference participants 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. |
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| Only a few more weeks to reach lawmakers in your home state 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. |
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| Join the Action Alert Network Whether it’s through a letter, fax, email, phone call, or in-person, connecting with your U.S. Representative and Senators is an important step in educating government officials about scleroderma and the impact it has on individuals and families. Action Alerts are time-sensitive announcements sent via email when it’s time to take action and contact your legislators about a vote or sponsorship of a bill that impacts people affected by scleroderma. |
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| NIH announces new research funding opportunity Despite advances in the understanding of the mechanisms of many rare diseases, and large investments by pharmaceutical and biotech industries, effective treatments are available for fewer than 5% of diseases. This notice of funding opportunity solicits applications that propose to conduct efficacy studies in an established rare disease preclinical model to demonstrate proof of concept that a proposed therapeutic agent warrants further development. In addition to preclinical efficacy, accompanying pharmacodynamic and pharmacokinetic studies would be supported. |
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| Scleroderma research grant applications due 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. |
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ZOOM: Thursday, August 24, 7 p.m. ET
The Caregiver Support Group will meet on August 24 at 7 p.m. Eastern. For more information, email support group leader Debbie Haussler. |
| Teens and Parents Support Group ZOOM: Wednesday, August 23, 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. |
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The 20%: Males Living with Scleroderma Support Group ZOOM: Wednesday, August 23, 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. Eastern. |
| ZOOM: Wednesday, August 23, 7 p.m. ET
Please join us on Wednesday, August 26 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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Cuidarte a Ti Mismo es Tan Importante Como Cuidar a Los Demás! Cuidar de los demás puede ser una experiencia gratificante, pero también puede afectar tu salud mental. Es importante tomarse un tiempo para ti mismo y priorizar tu propio bienestar, ya sea que eso signifique buscar el apoyo de un terapeuta o participar en actividades de cuidado personal. El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su taller virtual vía zoom:
Tema: “Cuidarte a ti mismo es tan importante como cuidar a los demás”.
Fecha: 19 de Agosto, 2023
Hora: 11:00 am Hora del este (EE. UU. y Canadá)
Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com
Regístrese con anticipación a este evento: https://forms.gle/yMdBXFjgU5rCvykD8 |
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