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| eLetter #924 | July 2, 2021 |
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Chef Katie Simmons
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Chef Katie Simmons Gets Cooking at the 2021 Virtual National Scleroderma Conference
CONNECT & THRIVE TOGETHER - Register Today!
Saturday, July 17, 12 p.m. - 8:30 p.m.
Sunday, July 18, 12 p.m. - 5:15 p.m.
Chef Katie Simmons will share her talent and taste for nutritious, low energy (easy) meal preparation at the 2021 virtual National Scleroderma Conference. For example, Chef Katie addresses swallowing issues with a nutrition balanced smoothie, and manages fluid retention with low sodium cooking.
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 and Genentech
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FDA Public Meeting Report on SSc Patient-Focused Drug Development
On October 13, 2020, the U.S. Food and Drug Administration (FDA) hosted a public meeting on patient-focused drug development for systemic sclerosis (SSc). The FDA was interested in hearing perspectives from individuals with SSc on the health effects and daily impacts of their disease, treatment goals, and decision factors considered when seeking out or selecting a treatment. Follow the links below to download the presentation slides or to watch the video recording on YouTube.
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G.I. Incontinence and Scleroderma
Looking for tips or answers to stomach/digestive issues related to scleroderma? Watch the Michigan Chapter July webinar to learn how and why scleroderma affects the G.I. tract, issues someone with scleroderma might face with incontinence and more. Featuring Rene Peleman, M.D., Macomb Gastroenterology, P.C.
VIDEO
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Lori Pierce is IAYT 2021 SEVA Award Finalist
Lori Pierce, Yoga for Scleroderma, has been living with scleroderma since 2002. She reaches fellow scleroderma warriors who think they can't do yoga. Isolated by COVID, Lori started the Yoga for Scleroderma Wednesday Wind-Down in June 2020 as a Zoom presentation with phone-in, no Internet or cellphone needed. In July, she added another weekly broadcast at 6:30 p.m. India Standard time, which is translated into Hindi on the third Wednesday of each month. In September, the podcast channel started, downloads reached 1,000 on December 31, 2020, and are now at 3,400 downloads from 66 countries. Lori covers all of the costs of the Zoom broadcasts and the podcast channel as her service to her Scleroderma Community. Lori will be recognized in the IAYT magazine Yoga Therapy Today and received a cash award toward her podcast costs.
PODCAST • YOUTUBE
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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
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Research Study to Evaluate an Online Fatigue Intervention Program
Researchers from the University of New Mexico seek participants for a study to evaluate an online fatigue intervention program for adults. To participate, be a U.S. resident, 18 or older, have systemic sclerosis (SSc, systemic scleroderma). Study involves attending and participating in a 1½ hour virtual meeting once a week for 6 weeks, completing questionnaires at the start and end of study, and an interview at the conclusion. Compensation is offered.
CONTACT: Janet Poole, Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761.
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Chronic Disease Day Signature Livestream Event
FACEBOOK: Tuesday, July 13, 1 p.m. Eastern Time
Mark your calendars for the signature Chronic Disease Day livestream event featuring policymakers, experts, and community advocates discussing issues impacting the chronic disease community post COVID-19. Hear special remarks from:
- Rep. Lauren Underwood (D-IL), U.S. Rep.
- Clorinda Walley, President of Good Days
- Julia Savacool, HealthCentral
REGISTER
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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
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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 immunocompromised 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
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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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