Scleroderma Foundation Northern California Chapter

Hello everyone, I haven’t posted in a while because I am now on hospice care (and not for scleroderma). It has been my pleasure to be a part of this foundation, 8 years ago I volunteered to manage the group’s Facebook page because I loved sharing information and connecting. However, I am no longer able to do that anymore. Anyone interested in doing that work please let Rachel know. Thank you

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the daily lives of those with rare diseases

Uncovering Gastrointestinal Involvemente in Systemic Sclerosis Healio News, May 26, 2000 Tracy Frech, M.D., M.S., Director of the Systemic Sclerosis Clinic at the University of Utah Hospital, was quoted in a Healio Rheumatology article, written by Robert Stott, regarding gastrointestinal involvement in systemic sclerosis.... Dr. Frech said, It is the most common involved internal organ in systemic sclerosis, and can be the presenting feature in 10% of our patients. During the course of an illness, 95% of systemic sclerosis patients will complain of gastrointestinal symptoms. Additionally, 6% to 12% of our patients will die from gastrointestinal tract involvement.

2020 Awareness Month Intro June is Scleroderma Awareness Month! June is Scleroderma Awareness Month30 days dedicated to spreading the word and working toward a cure. Starting June 1, meet the many amazing faces of scleroderma and get to know their inspiring stories.... Visit sclerodermaaware.org to access the social media toolkit to bring attention to this rare disease.

Scleroderma Education Videos on YouTube A series of educational videos relating to scleroderma and COVID-19 are posted on the Foundation's YouTube channel under a play list titled "COVID-19." The most recent addition is the recording of the April 24 webinar, Balancing your Immune System: a Special Webinar on Nutrition for Scleroderma Patients, featuring Elizabeth Volkmann, M.D., M.S., University of California, Los Angeles.

Scleroderma Vascular Disease: Much More than Raynaud Video Recording, 2016 National Patient Education Conference Watch a presentation by Lee Shapiro, M.D., Community Care Rheumatology, Saratoga, N.Y., recorded during the 2016 National Patient Education Conference. Dr. Shapiro points out that microvascular disease is more ubiquitous in scleroderma than commonly appreciated. Pulmonary hypertension, Raynaud, and scleroderma renal crisis are all well recognized vascular complications of the disease. This talk builds a case for vascular disease as the basis of many other manifestations, including gastrointestinal disease and calcinosis, and discusses angiogenesis as another possible treatment approach.

A Beautiful Place: Physical Health in Scleroderma Through the Mind Body Garden Watch a recording of the May 1, 2020, webinar presented by Lesley Ann Saketkoo, M.D., M.P..H., Tulane University Medical School, regarding strategies to improve health through physical mindfulness practices that specifically target health and well-being while living with scleroderma during the time of COVID-19. Collaboratively sponsored by the Scleroderma Foundation, the Scleroderma Research Foundation, and Scleroderma Canada.

YouTube logo Little Guy overlay Scleroderma Education Videos on YouTube A series of educational videos relating to scleroderma and COVID-19 are posted on the Foundation's YouTube channel under a play list titled "COVID-19."... The most recent addition is the recording of the April 24 webinar, Balancing your Immune System: a Special Webinar on Nutrition for Scleroderma Patients, featuring Elizabeth Volkmann, M.D., M.S., University of California, Los Angeles.

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to support critical, non-medical needs. The program is designed [] The post NORD Opens COVID-19 Financial Aid Program for Rare Disease Community appeared first on Scleroderma News.

Living with Scleroderma: Ways to Cope with Anxiety and Isolation Video Forum: April 13, 2020, 2 - 3 p.m. Eastern Time To help individuals affected by scleroderma during this time of social distancing and staying at home, the Foundation's Tri-State Chapter and the Hospital for Special Surgery's (HSS) Scleroderma, Vasculitis and Myositis Center is hosting a free video forum via Skype.... Featuring Juliette Kleinman, L.C.S.W., A.C.S.W., senior social work manager, HSS, and Susan Rodriguez, L.C.S.W., social worker, HSS. Moderated by Jessica K. Gordon, M.D., M.Sc., associate professor of clinical medicine, HSS. SKYPE MEETING

STaY Breathing! Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of the ongoing Gentle Yoga & Yogic Breathing (GYYB) program for individuals who have scleroderma. In the current environment of COVID-19, it is important to minimize exposure, which is especially relevant to those who have scleroderma. At the same time, keeping up with good exercise is the key to better health and symptom management. With this in mind, Dr. Sundar Balasubramanian ...is transforming the GYYB program into the telehealth mode so you can practice from home. Attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted. You may choose to attend one or more webinars from the following dates, all occur at 11 a.m. Eastern Time: April 4, 11, 18, 25 May 2, 9, 16 (Sorry I posted this a little late)

Recording of March 27 Webinar, "Staying Well During COVID-19" Watch the recording of the March 27 webinar, Staying Well During COVID-19, with Tracy Frech, M.D., M.S., director of the Systemic Sclerosis Clinic, University of Utah. Presented by the Scleroderma Research Foundation, the Scleroderma Foundation, and Scleroderma Canada.... https://www.youtube.com/watch?v=8Qrn9yzfRnw&feature=youtu.be

Video Recording of March 21 Video Forum on COVID-19 & Scleroderma Watch the recording of that March 21 video forum with five scleroderma experts about COVID-19 and its impact on individuals who have scleroderma. Maureen Sauvé: SPIN Patient Advisory Board and Steering Committee.... Dr. Janet Pope: Western University, London, Ontario Dr. John Varga: Northwestern University Scleroderma Program, Chicago, Illinois Dr. Donald Sheppard: McGill University, Montreal, Quebec Dr. Brett Thombs: McGill University, Montreal, Quebec; SPIN Presented by SPIN (Scleroderma Patient-centered Intervention Network) in sponsorship with the Scleroderma Society of Ontario, Scleroderma Canada, the Scleroderma Research Foundation, and the Scleroderma Foundation.