National Scleroderma Foundation

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eLetter #971 | May 27, 2022

	Memorial Day For anyone who has lost a loved one or friend in military service to our country, we stand by you today and every day. Thank you to all who serve our country and support our community every day. In observance of the Memorial Day holiday, the National Scleroderma Foundation national office will be closed on Monday, May 30. Staff will respond to calls and messages once the office reopens on May 31. Scleroderma.org
	Know Scleroderma June is Scleroderma Awareness Month and this year we are proud to announce our awareness campaign, "Know Scleroderma." To know scleroderma is to understand this rare disease and the impact it has on the lives of those it affects. Join our awareness campaign by following us on Facebook, Twitter, LinkedIn, and Instagram and sharing our awareness posts during the month of June. Scleroderma.org
	Join A Stepping Out to Cure Scleroderma Walk Near You Stepping Out to Cure Scleroderma walks give you a way to get involved and help advance our mission. By joining a walk, you help us take one step closer to finding a cure for scleroderma. Don't miss this fun and exciting opportunity to make a difference in the life of someone affected by this disease! Click here to find and register for a walk near you. Thank you to our Champion Sponsors!
	Showcase Your Company at the National Scleroderma Conference Exhibitor booth registration is open for the National Scleroderma Conference, held virtually this year from July 15-17. It’s a great opportunity to put your branding, products, and services in front of hundreds of conference attendees. You can use this online form to get started today!
	June Stakeholder Webinar ZOOM: June 16, 2022; 4 p.m. Eastern Join CEO Mary J. Wheatley for a quarterly update on National Scleroderma Foundation activities. REGISTER
	Parents of Children with Scleroderma June Support Group ZOOM: June 1, 2022; 7:30 p.m. Eastern It can be difficult to balance your fears and your child’s fears about scleroderma. But luckily, you are not alone. Join the Parents of Children with Scleroderma Online Support Group on June 1 from 7:30-9:00 p.m. Eastern to find support in the community and helpful tips about managing fear. REGISTER
	Help Advocate for Strong Federal Funding Are you looking for ways to advocate for scleroderma research funding? Learn about our Action Alert and how we are urging elected officials to support the inclusion of scleroderma in the Department of Defense PRMRP’s (Peer-Reviewed Medical Research Program’s) eligible conditions list in fiscal year 2023. You can join us by using the link and completing the built-in email generator to contact your Senators about supporting strong federal funding for scleroderma research. You can submit the action alert until June 30, 2022. TAKE ACTION
Maureen D. Mayes, MD, MPH	The Scleroderma Body: Head to Toe - Inside & Out with Dr. Maureen Mayes GOTOMEET: June 4, 2022; 11 a.m. Central The symptoms of scleroderma vary greatly from person-to-person, and not all people with scleroderma develop all complications. Maureen D. Mayes, MD, MPH will reveal the symptoms of scleroderma that may be visible when the skin is affected, and the invisible symptoms as when internal organ systems are affected. The Texas Chapter will continue The Scleroderma Body series on the 3rd Saturday in September, November, January, March, and May. REGISTER
	National Scleroderma Conference The 2022 Virtual National Scleroderma Conference will take place July 15-17 and will feature 30+ scleroderma-focused sessions presented by experts from across the country. Stay up to date on conference news by signing up to receive National Scleroderma Conference eAlerts. Thank you to our sponsors!
	Mogil's Mobcast New Episode On the most recent episode of Mogil's Mobcast, Ann continues her conversation with Jessica Farrell, PharmD. During the podcast, Dr. Farrell discusses medications that are used for Raynaud's, the GI tract, interstitial lung disease, renal disease, and pulmonary hypertension and will end the episode with information on how to access medications at affordable prices. If you would like to learn more about scleroderma medication, listen to the recent Mogil's Mobcast episode. LISTEN
Sean M. Fortier, MD	Research Grant Awards Highlight The 2022 research grant cycle set a record for the number of applications received and the amount of funds awarded. One of our New Investigator Awards was presented to: Sean M. Fortier, MD University of Michigan New Investigator Award Topic: Lung and Skin Myofibroblast De-Differentiation and Fibrosis Resolution in Systemic Sclerosis Depend on cAMP-Mediated Inhibition of p38 You can learn more about our research grant awards and recipients here.
	Become a Member Today For only $25 a year ($35 USD for those living outside of the USA), you can support our mission and gain special access to our quarterly magazine, the Voice, along with a discounted registration fee to our annual National Scleroderma Conference. Become a member yourself or give the gift of membership to a friend or family member by completing our online membership form or calling us toll-free at (800) 722-HOPE [4673]. MEMBERSHIP
	SYNC Meeting: Patient Empowerment VIRTUAL: June 3, 2022; 7 p.m. Eastern Join the Scleroderma Young Adults Needing Connection (SYNC) group on June 3 to discuss patient empowerment with speaker Evamarie Cole. REGISTER
	Sign Up for SPIN-SELF Feasibility Study Are you interested in learning practical skills to help cope with living with scleroderma? Sign up to test the Scleroderma Patient-centered Intervention Network’s (SPIN) self-management (SPIN-SELF) program. Join others with scleroderma in trying the SPIN-SELF program, which combines access to online modules that focus on topics important to people with scleroderma (e.g., fatigue, coping with pain, managing emotions and stress, among others) and a toolkit with resources on how to manage living with scleroderma. Discuss your goals and progress with others via eight group videoconference sessions. Receive CAD $100 for your time and help in this important research. You can learn more about the program by clicking here. Interested in participating in the study? You may be eligible to try out the program and take part in the group sessions. Click here to access the participant information and consent form.
	Ohio Sitdown FACEBOOK LIVE: May 29, 2022; 1 p.m. Eastern Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma. Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation. WATCH
	Join the Study on Scleroderma and Work Join the "Feasibility and Acceptability of the Making it Work Program for Systemic Sclerosis" study. The research study aims to identify the challenges that persons with scleroderma face while working, and assess the relevance of a program called “Making it Work” for workers with SSc. If you are interested in participating or learning about the study, please email Janet Poole, PhD, OTR/L at jpoole@salud.unm.edu or Mary Thelander-Hill, MOT, OTR/L, ATP at MThelanderHill@salud.unm.edu.
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