| September 15, 2023 | #1040 |
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| | | Please take our 10-question pulse survey As we work to track our progress toward our FY 2024 goals, we ask that you please take a quick 10-question pulse survey at scleroderma.wiki/pulseQ1. We appreciate your feedback! |
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| | | Grant applications are closing today Today is the last day to apply for a research grant opportunity. The National Scleroderma Foundation provides funding for New and Established Investigators based on investigator-directed topics, and the grant cycle is nearing completion. A cure for scleroderma remains an elusive goal, but your research could make a significant impact on the future of living with this disease.
Funding opportunities are available for early career and established investigators, and applications are due at 5 p.m. Eastern, Sept. 15, 2023. |
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| | | 3 Reasons to Give through the Combined Federal Campaign Federal employees and military personnel (including retirees) can donate to the Foundation through the Combined Federal Campaign (CFC) today!
Why should you give through the CFC?
1. You can designate a portion of each paycheck to the Foundation for a greater impact through automatic payroll deductions.
2. As unrestricted funds for the Foundation, your gifts will support our mission wherever they are needed most.
3. When changemakers in the federal community come together to help people living with scleroderma, their collective impact makes a big difference for our scleroderma community.
To give to Foundation through the CFC, simply visit the CFC’s online pledge portal and choose #10089. |
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| | | The year is winding down quickly, but you still have plenty of time to join us as we are Stepping Out to Cure Scleroderma.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 2001 – Scleroderma awareness takes on Capitol Hill
The Rare Disease Act, calling for an Office of Rare Diseases at the National Institute of Health was introduced by Senator Orrin Hatch, Utah, and Senator Edward Kennedy, Massachusetts. NIH authorized regional centers of excellence to focus on rare disease research and training and to increase funding for the Food and Drug Administration's Orphan Product Research Grant Program. That year, the Foundation brought scleroderma awareness to center stage in Washington, D.C., holding its first Capitol Hill Day. The Foundation also joined the Patient Consumer Coalition of the National Organization for Rare Disorders which serves as a voice for individuals with rare diseases to advocate for federal policies that can lead to increased availability of affordable drugs. |
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| | | National Scleroderma Foundation celebrates Hispanic Heritage Month National Hispanic Heritage Month, which runs from Sept. 15 to Oct. 15, honors the rich history, heritage, and significant contributions of the Hispanic and Latino community in the U.S. by shining a spotlight on a wide range of Latin cultures and highlighting the distinctive differences in each.
As we kick off the celebration of this important month, we would like to remind you that the Foundation offers educational programming specifically for our Spanish-speaking community members. |
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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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| | Localized Adults & Parents Support Group ZOOM: Tuesday, Sept. 19, 7 p.m. ET
The Localized Support Group for Adults and Parents hosts its meeting on the 3rd Tuesday of the month at 7 p.m. ET. Please email localizedsg@scleroderma.org for the zoom link. |
| New Bereavement Support Group ZOOM: Tuesday, Sept. 19, 7 p.m. ET
If you have lost a loved one to scleroderma, you may find support and solace in speaking with others who are grieving or have been through a journey similar to yours. Our monthly bereavement support group will begin on Tuesday, Sept. 19 from 7:00-8:30 pm ET. If you are interested in learning more, please email bereavement@scleroderma.org. |
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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, October 7, 1 - 3 p.m. ET via Zoom. |
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