National Scleroderma Foundation

Scleroderma Foundation

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eLetter #922 | June 18, 2021

	Awareness Month: Here for You When Katie was diagnosed with scleroderma, she didn’t know much about the disease, or anyone else who had it. That’s when she started doing her own research and found the Scleroderma Foundation. We were here for Katie when she needed us, and we're here for everyone affected by scleroderma. Watch Katie's video on the Foundation's social media sites. Share and retweet to increase awareness and understanding of scleroderma; and please include #SclerodermaAwareness in your posts. FACEBOOK • TWITTER • INSTAGRAM
Kristin Highland, M.D.	Learn About Scleroderma and Lung Health at the 2021 Virtual National Scleroderma Conference CONNECT & THRIVE TOGETHER Saturday, July 17, 12 p.m. - 8:30 p.m. , July 18, 12 p.m. - 5:15 p.m. Lung health in scleroderma is a critical topic that will be addressed by Kristin Highland, M.D., at the 2021 virtual National Scleroderma Conference. A U.S. Air Force veteran, Dr. Highland is on faculty at the Cleveland Clinic in Ohio, where she is Research Officer and Associate Program Director for Research and Scholarly Activity. She is also director of the Rheumatic Lung Disease Program and an active member of the Interstitial Lung Disease and Pulmonary Hypertension programs. She has published more than 100 peer-reviewed articles. She serves on the editorial board of Lancet Respiratory and is an associate editor of Respiratory Medicine. Register today (rates increase July 9): Person Living with Scleroderma $30 General Admission $50 Business/Academia $125 Members receive a 29% discount code. scleroderma.org/becomeamember. We are grateful for our generous sponsors: Presenting Sponsor: Boehringer Ingelheim Gold Sponsor: Janssen Pharmaceutical Companies of Johnson & Johnson Corporate Partner: Talaris Therapeutics Partners: Horizon Therapeutics, Genentech
	Nutritional Tips & Strategies BIPOC Support Group ZOOM: Sunday, July 11, 2021; 4 p.m. Eastern Time Please join the Scleroderma Foundation BIPOC Support Group when guest speaker Susan Nyanzi, Dr.P.H., M.C.H.E.S., A.C.S.M., F.R.S.P.H., will discuss nutritional tips and strategies for individuals living with scleroderma. Dr. Nyanzi graduated from Loma Linda University School of Public Health with a Doctorate in Public Health with a sub-specialty in chronic disease management. As a public health professional, Dr. Nyanzi specializes in integrated lifestyle counseling for the prevention and management of chronic degenerative disorders such as scleroderma, diabetes, heart disease and rheumatoid arthritis. She additionally consults with individuals who have scleroderma on how to best manage their disease through nutrition and physical activity. As a person with scleroderma, Dr. Nyanzi is board member of the Foundation's Southern California Chapter. She has presented on scleroderma at local and national conferences, seminars, and support groups. REGISTER
	The 20%: A Virtual Support Group for Males Living with Scleroderma ZOOM: Wednesday, June 23, 2021; 7-8 p.m. Eastern Time Welcome to the group! Scleroderma diagnoses are less common among men, with males making up about 20 percent of the scleroderma population. To support the men in our community and beyond, the Michigan Chapter is hosting a support group just for you. Join the virtual group June 23 from 7 to 8 p.m. You’ll learn about the support group series, reflect on your scleroderma journey with mindful questions, and connect with others in your position. Register now and find support and hope in the community. REGISTER
	Black and Rare: Scleroderma in the African-American Community WEBINAR: Tuesday, June 29, 2021, 1 - 2 p.m. Eastern Time Join the Rare Disease Diversity Coalition for a panel discusson on "Black & Rare: Scleroderma in the African-American Community." The webinar takes place on World Scleroderma Day, Tuesday, June 29, from 1 to 2 p.m. Eastern Time. Presented by the Black Women’s Health Imperative’s (BWHI) Rare Disease Diversity Coalition (RDDC), the webinar features experts who will unpack the clinical knowledge gathered around scleroderma, how the disease affects the African-American community, and ways to mobilize stakeholders to ensure that Black patients get the best treatment and care available. The webinar will include individuals who have scleroderma and the following guest speakers: Virginia Steen, M.D., Chair, Medical & Scientific Advisory Board, Scleroderma Foundation Francesco Boin, M.D., Cedars-Sinai Medical Center Christopher S. King, M.D., Inova Fairafax Hospital Robert J. Riggs, CEO, Scleroderma Foundation Vanessa Fields, Person with Scleroderma Demeshia "Demi" Montgomery, Patient Advocate REGISTER
	Happy Juneteenth! Join the Scleroderma Foundation as we celebrate the inaugural Juneteenth national holiday! “All Americans can feel the power of this day, and learn from our history,” President Biden said at a ceremony at the White House, noting that it was the first national holiday established since Martin Luther King’s Birthday in 1983. JUNETEENTH
	Scleroderma Education Forum WEBINAR: Thursday, June 24, 2021, 12 p.m. - 1 p.m. Eastern Time. You are invited to the upcoming Scleroderma Education Forum, "Learn About Two New Approved Treatments for Scleroderma Lung Disease," presented by the Hospital for Special Surgery (HSS) in collaboration with the Scleroderma Foundation Tri-State Chapter. Kimberly Showalter, M.D., M.S., will discuss the approval of two new medications for the treatment of Interstitial Lung Disease. Juliette Kleinman, L.C.S.W., A.C.S.W., and Susan Rodriguez, L.C.S.W., social workers at HSS, will discuss strategies to "Optimize Patient Access" to these approved medications. REGISTER
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	Monitor Your Blood Pressure to Improve Your Heart Health The NIH National Heart, Lung, and Blood Institute produced a video advising individuals to monitor their blood pressure as a way to improve their heart health. High blood pressure is a major risk factor for heart disease. High blood pressure can affect anyone, bit women--who often dismiss warning signs--should be especially mindful of their numbers. Everyone should have their blood pressure checked at least once a year by their healthcare provider and ask about ways to control it. This video shows tips for measuring your blood pressure at home. VIDEO
	Online Mental Health Intervention Significantly Helps the Isolated, Immunosuppressed During Pandemic Michigan University Health Lab reported on a study involved investigators from Michigan Medicine on the pandemic's mental health affect on people with scleroderma. The Health Lab's report says, "The paper, published in the Lancet Rheumatology, analyzed the mental health progress of over 150 people with scleroderma... Researchers randomized patients to either receive video support intervention or be put on a wait list, finding mental health outcomes improved after the program finished." Read the full article online. READ
	Para Información Sobre COVID-19 El Comité Directivo del Consejo Médico y Científico Asesor de la Fundación Esclerodermia está de acuerdo con las recomendaciones de los CDC para aquellos que tienen una afección o toman medicamentos que debilitan el sistema inmunitario. Estudios recientes sugieren que para las personas inmunocomprometidas, en particular las que toman micofenolato mofetilo, la vacuna puede tener una eficacia inferior al 50%. Por ello, ponen énfasis en recomendar que las personas diagnosticadas con esclerodermia/esclerosis sistémica que reciban terapias inmunosupresoras como el micofenolato mofetilo y el rituximab, así como quienes convivan con ellas, sigan utilizando mascarillas, practiquen el distanciamiento social, eviten las aglomeraciones y los espacios interiores poco ventilados y sean diligentes en el lavado frecuente de manos. Lee Mas
	Important Updates Regarding Mask Wearing for Immunocompromised Individuals with SSc Updated May 17, 2021 With the recent CDC announcement of new guidelines on mask wearing, the Scleroderma Foundation's Medical & Scientific Advisory Board issued the following statement: The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. Recent studies suggest that immunocomprimised people, particularly those on mycophenolate mofetil, may have had less than 50% effectiveness of the vaccine. Thus, they strongly recommend that people diagnosed with scleroderma/systemic sclerosis who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab and those who live with them should continue to wear face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing. These guidelines, along with more information and recommendations for individuals affected by scleroderma about COVID-19 are posted at scleroderma.org/covid19. Please check this page from time to time for updates. COVID‑19
	Thank You to Our Presenting Sponsor! The Scleroderma Foundation is grateful for the generous support of Boehringer Ingelheim Pharmaceuticals, the Presenting Sponsor of the 2021 National Scleroderma Conference. Learn about Boehringer Ingelheim Learn about the National Scleroderma Conference
	Idiopathic Pulmonary Arterial Hypertension: Your Guide Unlike other types of PAH, the cause of idiopathic pulmonary arterial hypertension is unknown. However, the symptoms, diagnosis, & treatments for IPAH are similar to those of other forms of pulmonary arterial hypertension. Learn more via myPHteam: myPHteam
	Ticket to Work WEBINAR: Wednesday, June 23, 3 p.m. ET Looking for a job can be stressful, but work can have a positive effect on your mental health. During this month’s Work Incentive Seminar Event (WISE) webinar, learn how the Ticket to Work (Ticket) Program and Ticket Program service providers can help. CHOOSEWORK
	7.10 Chronic Disease Day With preventable illness reaching a tipping point, chronic disease community members with rare and unpreventable conditions continue to suffer from lack of attention and resources. Chronic Disease Day raises awareness so that we can flip this dynamic. Chronic Disease Day promotes everyday wellness and caregiving for ourselves and each other. Let’s work together to lower the number, build healthier communities, and better support those with unpreventable conditions. CHRONIC DISEASE DAY