National Scleroderma Foundation

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eLetter #977 | July 8, 2022

	There is Still Time to Register for the National Scleroderma Conference Join us on July 15, 16, and 17 at our virtual National Scleroderma Conference! Connecting Our Journey will provide informational sessions on topics such as: Life with scleroderma Building your scleroderma network Connecting with resources and support systems Current and upcoming scleroderma research And, so much more! The conference will take place July 15-17 and will feature 30+ scleroderma-focused sessions presented by experts from across the country, and some sessions will be live, giving you the opportunity to talk directly to our presenters! REGISTER Thank you to our Patron Sponsors!
	Chronic Disease Day July 10 is Chronic Disease Day. As a chronic disease, scleroderma persists and can affect someone throughout all stages of life. On #ChronicDiseaseDay, the National Scleroderma Foundation would like to recognize the strength and perseverance of the 150+ million people affected by a chronic disease, especially those affected by scleroderma.
	World Scleroderma Day Video Available Thank you to everyone who has advocated 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. You can watch it now on our YouTube channel. Keep the momentum going by sharing our content on Facebook, Twitter, LinkedIn, and Instagram. WATCH
	Become a Member 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
	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 find leaders and co-leaders for the support groups.
	The 20%: A Virtual Support Group for Males Living with Scleroderma VIRTUAL: July 27, 2022; 7- 8 p.m. Scleroderma diagnoses are less common amongst men. In fact, only 20% of individuals living with scleroderma are made up of males. We have designed a support group especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting, we will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m. REGISTER
	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.
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