National Scleroderma Foundation

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eLetter #970 | May 20, 2022

	“I Still Have My Handouts and Notes From That First Conference” In 1998, a few years after she was diagnosed with scleroderma, Diane Lee learned that the Foundation’s National Scleroderma Conference was being held in Houston that year. The conference transformed Diane’s fear into knowledge, empowering her to learn more and to take action by serving the scleroderma community in Texas. Read about Diane’s journey with scleroderma here: READ
	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!
	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 8 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.
	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
	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 May 27, 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 sponsor!
	Now Accepting Scleroderma Research Grant Applications If you hold a faculty-equivalent position and are newly pursuing a career in scleroderma-related research, apply to our New Investigators Grant. Anyone who is an established researcher both inside and outside the field of scleroderma research who wishes to propose pilot studies to obtain preliminary data dealing with a highly innovative and/or highly relevant theme related to scleroderma should apply for our Established Investigator Grants. To learn more about our research grants or apply, visit our website. We will accept applications until September 15, 2022.
Peter James Niedbalski, PhD	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: Peter James Niedbalski, PhD University of Kansas Medical Center Research Institute New Investigator Award Research Topic: MRI for Screening and Monitoring Systemic Sclerosis Interstitial Lung Disease You can learn more about our research grant awards and recipients here.
	Males with Scleroderma Support Group ZOOM: May 25, 2022; 7- 8 p.m. Eastern Are you a male living with scleroderma? The Males with Scleroderma Support Group will hold their next meeting on May 25 from 7 - 8 p.m. Eastern. This month, the group will look at the differences between occupational and physical therapy and how both can improve your quality of life. REGISTER
	Caregiver Connection ZOOM: May 21, 2022; 10 a.m. Mountain All caregivers looking for support are welcome to join the Caregiver Connection Support Group on May 21, 2022, at 10 a.m. Mountain. Sara Clement, Southern Colorado Support Group Leader, will host the meeting. To attend, request the Zoom link by sending an email to Sara at sarc56@gmail.com.
	Teens & Parents Support Group (New Day and Time!) ZOOM: Wednesday, May 25, 2022; 6 p.m. Mountain Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support team will have Teen & Parent Support Group meetings each month on the 4th Wednesday via Zoom at 6:00 p.m. Mountain. The group will be led by Debra Droux, Maria Tafoya, and Jackie Martinez. Email nmsclero@gmail.com or call (505) 503-3545 to receive the Zoom meeting information. We ask that a parent or caregiver be present with their teen when the meeting starts.
	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
	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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