National Scleroderma Foundation

Homepage | Forward to a Friend | Make a Donation

eLetter #969 | May 13, 2022

	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!
	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
	21st Annual Cheri Woo Scleroderma Education Seminar ZOOM: May 14, 2022; 10 a.m. - 2:15 p.m. Pacific The 21st Annual Cheri Woo Scleroderma Education Seminar will be on Saturday, May 14 from 10 a.m. - 2:15 p.m. Pacific. The live zoom event will have Jeffrey Robinson, MD, Dan Seifer, MD, Ginny Maril, PhD, and JoAnna Harper, PharmD, as speakers. Topics include scleroderma's effect on the lungs, chronic illness and mental health, and CBD and THC. This event is free and open to anyone interested in learning more about scleroderma. You can learn more and register at the link. 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 FY 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. TAKE ACTION
Maureen D. Mayes, MD, MPH	The Scleroderma Body: Head to Toe - Inside & Out with Dr. Maureen Mayes GOTOMEET: May 21, 2022; 12 p.m. - 1 p.m. Eastern 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.
	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.
Kerri Ilene Aronson, MD, MS	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: Kerri Ilene Aronson, MD, MS Weill Medical College of Cornell University New Investigator Award Research Topic: Development of a Stakeholder Engaged Intervention to Improve Knowledge and Health-Related Quality of Life in SSc-ILD You can learn more about our research grant awards and recipients here.
	Mogil's Mobcast On the most recent episode of Mogil's Mobcast, Ann talks with Jessica Farrell, PharmD, who is a clinical pharmacist and a professor at the Albany School of Pharmacy and Health Sciences. The conversation with Dr. Farrell is divided into two episodes, part one discusses immunosuppressants. If you would like to learn more about scleroderma medication, listen to the recent Mogil's Mobcast episode. LISTEN
	BIPOC Support Group Meeting VIRTUAL: May 15, 2022; 4 p.m. Eastern Learn about important topics such as wills, power of attorney, health proxy, and Social Security Disability filing from Mike Levengood, Attorney at Law, during the BIPOC support group's May 15 virtual meeting. REGISTER
	Buffalo and Rochester Support Group Meeting VIRTUAL: May 14, 2022; 1 p.m. Eastern The Rochester Support Group invites you to their Move to the Beat of Your Own Body event with Ms. Sarah Otis on Saturday, May 14, 2022, from 1-3 p.m. Eastern. This is a virtual and interactive activity. REGISTER
	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.
	myPHteams While pulmonary hypertension affects about 10% - 20% of the general population, pulmonary arterial hypertension is quite rare. Have questions about the differences between the two? Explore this myPHteams resource and join members in discussing the topic. READ
Advertisement