National Scleroderma Foundation

Scleroderma Foundation

Homepage | Forward to a Friend | Make a Donation

eLetter #943 | November 12, 2021

	Ask Your Senators to Protect Scleroderma Research Funding TAKE ACTION by November 24, 2021 Currently, there is a $5 million Scleroderma Peer-Reviewed Medical Research Program at the Department of Defense for continued research into scleroderma. There is a strong connection between environmental exposures and the onset of autoimmune diseases, which leaves military personnel at risk for developing conditions like scleroderma. Further, scleroderma impacts military personnel because the scarring associated with the disease process has broad applications to combat injuries. Senators are currently working on the final FY 2022 Dept. of Defense appropriations bill and deciding what final funding levels will be. At this critical juncture, you can make a difference if you act by November 24. Please CLICK HERE to send emails to the Washington, DC offices of your Senators to ask that they “support funding for the Scleroderma Peer-Reviewed Research Program at $5 million in the final DoD FY 2022 bill.”
	BIPOC Support Group Meeting ZOOM: November 14, 2021; 4 - 5:30 PM Eastern Join our facilitators for a fun and engaging open discussion geared toward understanding the activities and discussions you want to see in the future. Please email your questions and discussion ideas to our group facilitators before the meeting at CL382p@gmail.com. After registering, you will receive a confirmation email containing information about joining the meeting. We look forward to seeing you there! Please register in advance for this meeting. REGISTER
	El Corazón en la Esclerodermia GoToWebinar: Viernes 19 de Noviembre 4 - 5 PM hora del este Únase con la Fundación de Esclerodermia y Javier Jiménez, MD, PhD, FACC para este evento educativo virtual. En esta presentación, el Dr. Jiménez revisará las complicaciones comunes relacionadas con la esclerodermia en el corazón. REGÍSTRESE Patrocinado por Horizon Therapeutics
	The 20%: A Virtual Support Group for Males Living with Scleroderma ZOOM: November 17, 2021; 7 - 8 PM Eastern TOPIC: Hand Therapy To support the men with scleroderma in our community, the Michigan Chapter is hosting a virtual support group series just for you. Join our November virtual group on 11/17 from 7:00-8:00 p.m. EST. This session focused on hand therapy will dive into the practice and explain the potential benefits for pain relief and range of motion. There will be time at the end to have your questions answered, too. Register now and find support and hope in the community. REGISTER
	Overview of Medications Used for Scleroderma VIDEO: Recorded July 2021 Watch this presentation from the 2021 virtual National Scleroderma Conference with Jessica Farrell, PharmD, as she discusses current medications used to treat individuals who have scleroderma focus for the four main features of the disease: inflammation, autoimmunity, vascular disease, and tissue fibrosis. Because there are multiple subtypes and different clinical presentations of scleroderma, medication regimens vary greatly from individual to individual. This presentation will review common medications prescribed in scleroderma. WATCH
	November 15 is National Philanthropy Day Thirty-five years ago, President Reagan named November 15 National Philanthropy Day. This day celebrates the importance of working together for the common good. At the Scleroderma Foundation, philanthropic deeds happen every day from of our amazing volunteers to our community of givers. To all who work hard to advance the work of the Foundation: THANK YOU!. DONATE
Advertisement


	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.
	#CaregiverAnd - Celebrate the Passions That Enrich Your Life Being a family caregiver is incredibly important, but it is critical not to lose sight of who you are. Your sense of self makes your life complete. This is an essential component of self-care that can ultimately prevent caregiver burnout and depression. #CaregiverAnd shifts that focus by highlighting the other roles, activities, and passions that make up your life. Learn more at the Family Caregiver Action Network. #CAREGIVERAND
	PHA Pocket Card The PHA Wallet Card describes pulmonary hypertension, including common symptoms and risks and directs readers to the Pulmonary Hypertension Association website to learn more about the disease. It can even be given to people who may be at risk for developing PH from an associated disease or who exhibit symptoms, because the card also states that people with PH are not alone and that PHA can help. Download the PHA pocket card and print at home. PHA POCKET CARD
	Choosing a Service Provider That's Right for You WEBINAR: November 17, 201; 3 - 4:30 PM Eastern The November WISE webinar discusses how working with a Ticket to Work service provider can help "Ticketholders" as they make the decision to work, search for jobs, and transition to the workplace. The webinar covers: The free services and supports available through Ticket Program service providers How to choose a service provider that’s right for the Ticketholder How to connect with a Ticket Program service provider REGISTER
	Physical Activity Guidelines for Americans Being physically active is one of the most important actions a person can take for overall health and wellness. The U.S. Department of Health & Human Services (HHS) developed the Physical Activity Guidelines for Americans to help everyone achieve that goal. Even people with chronic disease and disability should exercise in the way they are able to. To help, the 2021 version of the guide includes a section on "Key Guidelines for Adults With Chronic Health Conditions and Adults With Disabilities." You can download the guide from the HHS website at the link below. DOWNLOAD
	myPHteam If you or a loved one is living with Pulmonary Hypertension, you’ve probably spent a lot of time researching the condition and trying to understand the most essential information. Check out this a myPHteam resource discussing five less known facts about PH. myPHteam
Advertisement

Advertisement