National Scleroderma Foundation

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eLetter #976 | July 1, 2022

	Kevin Boyanowski Elected Chair of the Board The National Scleroderma Foundation has elected Kevin Boyanowski to serve as Chair of the Board of Directors for a two-year term. Mr. Boyanowski has served on the Board since 2018. Prior to joining the Board, he volunteered with the Foundation’s Ohio chapter, where he and his wife Mariann are still involved today. Please join us in congratulating our new chair. Learn more about our Board of Directors at our website. READ
	Independence Day In observance of Independence Day, our offices will be closed Monday, July 4. Staff will respond to calls and messages once the office reopens on July 5. Photo credit: Alex Othon, National Scleroderma Foundation Southeast Florida Chapter
	Conference Registration is Now Open You can now register for the 2022 Virtual National Scleroderma Conference. The 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. REGISTER Thank you to our Patron Sponsors!
	World Scleroderma Day Video Available Thank you to everyone who has been advocating for Scleroderma Awareness Month by sharing our content on social media. In particular, World Scleroderma Day was commemorated by a special video emphasizing the experiences of individuals affected by scleroderma. Keep the momentum going by sharing our content on Facebook, Twitter, LinkedIn, and Instagram. WATCH
	2022 Young Adults Support Group Meeting ZOOM: July 7, 2022; 7:30 - 8:30 p.m. Eastern The Young Adult Support Group (age 18 to 30's) will meet virtually by Zoom at 7:30 - 8:30 p.m. Eastern. This is a supportive chat for individuals living with scleroderma, family members, friends and caregivers. The meeting is free and all are welcome to attend. For additional information and the meeting link, please contact Amanda at 908-328-3991 or amanda.tufaro@gmail.com.
	SPIN Newly Diagnosed and Caregivers Virtual Support Groups Are you living with scleroderma and identify as transgender, non-binary, Two-Spirit, or another non-cisgender identity? SPIN is looking for individuals to join an advisory team to provide input on projects related to the impact of sex/gender on scleroderma. If you are interested or would like more information, please contact spingeneral@gmail.com.
	LGBTQ+ Virtual Support Group The National Scleroderma Foundation stands with LGBTQ+ members of our community across the country. If you are interested in starting/joining an LGBTQ+ scleroderma support group, please let us know!
	Newly Diagnosed and Caregivers Virtual Support Groups The National Scleroderma Foundation would like to invite members of our community who are interested in starting/joining a Newly Diagnosed or Caregivers virtual support group to please let us know! We will be creating a focus group for each support group to help determine best dates and times to meet, gauge participation, and to find leaders and co-leaders for the support groups.
	RENEW Study Looking for Participants RENEW, a fatigue management intervention program at the University of Michigan, is looking for participants for an intervention study targeting problematic scleroderma symptoms. The study is open to all participants with a special interest in members of the BIPOC community. During the study, individuals will be randomized into two groups. One group will receive the 12-week program with resources for symptom self-management right away, and the other group will be given access to the program after 12 weeks. The study will compensate individuals for their time. To be eligible you must be: 18 years or older having fatigue that impacts your daily life and functioning Diagnosed with systemic sclerosis (scleroderma) Access to a computer and an internet connection Ability to speak and read English For more information, please contact us at 734-615-8543 or sbolde@med.umich.edu. If you are interested in participating, go to the RENEW website.
	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.
	myPHteam An echocardiogram is a safe and common test used to help diagnose and treat pulmonary hypertension (PH). Read more from myPHteam exploring what the test involves, how it can be used in the diagnosis of PH, and what this test's results can tell doctors READ
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