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Scleroderma Foundation
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eLetter #892| November 20, 2020  

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Scleroderma Virtual University Wraps Up

The Scleroderma Virtual University patient education series concluded November 18 with a Spanish language webinar. Between the summer series, which began in July, and the fall series, 17 webinars were presented to the scleroderma community to keep the Foundation's promise to deliver on its mission of support, education, and research despite the pandemic. You can find video recordings of all of the webinars online, except the August 12 youth program for privacy reasons, by clicking the links below.

Thank you to the excellent health professionals who lead these webinars, and thank you to our generous Diamond National Sponsors: Actellion, a Janssen Pharmaceutical company of Johnson & Johnson, and Boehringer Ingelheim; and corporate sponsors: Corbus Pharmaceuticals and Horizon Therapeutics

YouTube 2020 Virtual University November 18 Mendoza

VIDEO: Manejo de la Esclerosis Sistemica: Perspectivas Actuales y Futuras

Presentado originalmente el 18 de noviembre de 2020 por Fabian Mendoza-Ballesteros, M.D., Director Asociado del Centro de Esclerodermia, Universidad Thomas Jefferson. "Manejo de la Esclerosis Sistemica: Perspectivas Actuales y Futuras" se centró en los tratamientos disponibles para quienes viven con esclerodermia y analizó el futuro de la investigación y el tratamiento de la esclerodermia. Presentado como parte de la serie de otoño de educación para pacientes de Scleroderma Virtual University.

VIDEO

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Recognition for Outstanding Service

Every year at the National Patient Education Conference, the Scleroderma Foundation takes time to recognize individuals and chapters for their outstanding service during the preceding year. Unfortunately, the pandemic removed the opportunity thank people in person, and so we present to you here the 2020 National Volunteer Awards.

National Volunteer of the Year
The 2020 National Volunteer of the Year award is proudly presented to Amy Gietzen. Amy partnered with the Scleroderma Foundation to create and facilitate an online community forum (Inspire SuperStarz) to allow young adults living with scleroderma to connect and offer support for their journey living with a rare disease. In 2019, Amy coordinated stronger connections online by sharing her perspectives and starting meaningful conversations with this group. Young adults regardless of location can now connect and offer mutual support. Congratulations, Amy!

National Support Group Volunteer of the Year
Barb Frodin's journey to become a scleroderma support group leader started to honor the memory of her best friend by helping her friend’s daughter, Sandee, newly diagnosed with scleroderma. As co-leader, Barb stepped in when Sandee had health setbacks to kept the Denver group going. Deeply involved, Barb ultimately joined the Rocky Mountain chapter board in 2018. She overcame her tech struggles to incorporate “JoinMe” and PowerPoint presentations for speakers. She continued group email and phone communications in between meetings, and held the summer picnic on her own. Barb also mentored the new Southern Colorado support group leader and even attended several meetings in Colorado Springs. Always learning, Barb was one of the first to register for SPIN-SLEDD training. Congratulations, Barb!

AWARDS

Michigan Parents Online Group November 2020

Parents of Children with Scleroderma

Online Support Group: December 2, 2020, 7:30 - 9 p.m. Eastern

Do your family members, friends or even strangers offer advice about your child’s scleroderma? Are you unsure how to respond to these remarks? Join us for an online support group on December 2 from 7:30-9:00 p.m. to learn tips and tools to better navigate these comments. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

ZOOM

Caregivers Action Network Rare Caregivers

November is National Family Caregivers Month

Rare Caregivers is a comprehensive online guide produced by the Caregiver Action Network to address the distinct needs of family caregivers of loved ones with rare diseases.

  • Caregiving Information You Can Use Now
  • Take Care of Yourself
  • Family Matters
  • Feelings You May Have
  • Other Places to Turn for Help

RARE CAREGIVERS

Super Health eVoices Live

Super HealtheVoices Live!

ONLINE: November 21, 11 a.m. - 8:45 p.m. Eastern Time

Gather virtually with HealtheVoices to talk about what it means to be a leader, a patient, an advocate, a caregiver, and a friend in today’s environment. Keep building bridges, overcoming barriers, and finding new ways to bring hope and support to those we serve — because advocacy doesn’t stop. John Novack, head of patient engagement at Inspire.com, will present "Five Ways to Turn Up the Volume on Your Media Coverage" during this live event. This free event is for advocacy leaders.

AGENDA - REGISTER

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U.S. F.D.A. Materials Available from Patient-Focused Drug Development Public Meeting 

On October 13, 2020, the U.S. F.D.A. hosted a virtual public meeting on Patient-Focused Drug Development for Systemic Sclerosis. The F.D.A. was interested in hearing patients’ perspectives on the impact of systemic sclerosis on daily life and patient views on treatment approaches. The materials are available for viewing at the link below.

MATERIALS

Individuals and family members of individuals with systemic sclerosis can share written comments on the public docket about their symptoms and daily impacts, thoughts on treatment options, and thoughts on what they would look for in an ideal treatment for systemic sclerosis, as well as any other thoughts and experiences about systemic sclerosis that they would like to share. The public docket allows people to post written comments that can be seen by others. If you do not wish to share your personal information, select the anonymous option at the end of the comment submission form. The public docket is open until December 15, 2020, so please be sure to submit any written comments before that date.

PUBLIC DOCKET

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COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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