National Scleroderma Foundation

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eLetter #965 | April 15, 2022

	Ashley Barron Announced as Celebrity Ambassador The National Scleroderma Foundation is proud to announce recording artist Ashley Barron has been named our official Celebrity Ambassador. A new star on the country music scene, Barron has scleroderma. Now as Celebrity Ambassador, Barron is working to represent the organization and increase awareness and understanding of scleroderma. We are thrilled to work with Ashley and cannot stop listening to her inspiring music. Barron's latest single, "The Wind," is an encouraging anthem to keep pushing through when times are difficult as there is hope on the other side. Listen to it here. To learn more about our Celebrity Ambassador visit our website.
	Now Accepting Scleroderma Research Grant Applications As the leading nonprofit supporter of peer-reviewed scleroderma research, the Foundation has committed over $30 million towards research over the years. The current funding levels are $2.723 million annually. There are two tracts for research grants: New and Established Investigators. 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.
	Research Grant Awards Highlight: The 2022 research grant awardees set a record for the number of applications received and the amount of funds awarded. One of the awards, The Mark Flapan Award, was awarded to: Janet L. Poole, PhD, OTR/L University of New Mexico Established Investigator Award Research Topic: Feasibility and Acceptability of the Making it Work Program for Systemic Sclerosis You can learn more about our research grant awards and recipients here.
	COVID-19 Vaccination in Autoimmune Disease (CoVAD)-2 Study COVID-19 Vaccination in Autoimmune Disease (CoVAD) study is a multicenter patient self-reporting electronic survey to collect meaningful data on the effects of COVID-19 vaccination in patients with autoimmune diseases and healthy individuals. There are several questions regarding the long-term safety of COVID-19 vaccination, specific effects in vulnerable populations including pregnant and lactating women, the utility of heterozygous booster shots and newer medicines, post-vaccination disease flares, and post-COVID syndrome that remain unanswered. The survey will help answer these important questions. Have you #GotYourCOVIDShot yet? If you are 18 years or above, please help researchers learn about its long-term effects and disease flares in autoimmune diseases compared with healthy controls irrespective of vaccination status. Take the survey at the link below. SURVEY
	Pulmonary Hypertension in Systemic Sclerosis Webinar VIRTUAL: May 4, 2022; 3:00 - 4:00 p.m. Eastern Learn essential information about Pulmonary Hypertension in Systemic Sclerosis during a discussion with the National Scleroderma Foundation and Dr. Soumya Chatterjee, Rheumatology Education Program Director of the Cleveland Clinic, Ohio. The discussion will introduce how to identify the signs and symptoms of PAH. What exactly is Pulmonary Arterial Hypertension? How is it diagnosed? How is it treated? We will explore these topics and much more. REGISTER A special thanks to Janssen Pharmaceutical for sponsoring this event.
	Virtual Brand Launch on April 21 ZOOM: April 21, 2022; 6:00 - 7:30 p.m. Eastern The National Scleroderma Foundation invites you to celebrate with us at a Virtual Brand Launch event on April 21 from 6:00 - 7:30 p.m. ET. Join us as we celebrate our new brand and how it will elevate our work to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks. We will have breakout sessions during the event to connect as a community in small groups. We look forward to seeing you there! REGISTER ONLINE
	COVID-19 Updates The COVID-19 Vaccination, Prevention, and Treatment article on our website has been updated by its authors, Jiha Lee, MD, MHS, and Dinesh Khanna, MD, MSc of the Michigan Medicine Scleroderma Program, to reflect the FDA's expansion of the Emergency Use Authorization of COVID-19 vaccinations. The article provides crucial information for individuals living with scleroderma who are concerned about COVID-19. For more information, please read the full article on our website. READ
	New Article About COVID-19 Vaccine Lancet Rheumatology published a new article, "Systemic sclerosis and COVID-19 vaccines: a SPIN Cohort study," on the only large study on vaccine experiences in patients with autoimmune rheumatic disease. The article stated that patient-reported adverse reactions were similar in nature and prevalence to those in the general population. However, these results were not reported separately for patients with systemic sclerosis. To learn more about the study's findings, visit the link below to access the full article. READ
	Teens & Parents Support Group ZOOM: April 23, 2022; 10 a.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 Saturday via Zoom. 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.
	Caregivers Connection Support Group ZOOM: April 16, 2022; 10 a.m. Mountain All caregivers are welcome. Sara Clement, Southern Colorado Support Group Leader, will be hosting. To attend, request the Zoom link by sending an email to Sara, at sarc56@gmail.com.
	Mogil's Mobcast In her recent episode of Mogil's Mobcast, Ann Mogilevsky talks with Dr. Richard Silver about his wealth of knowledge relating to tests available for individuals who have scleroderma and the importance of having them done. Dr. Silver is the co-director of the Scleroderma Center at the Medical University of South Carolina in Charleston, SC, and has been working in rheumatology with scleroderma patients for four decades. LISTEN
	Want to Join a Special Group Within the Scleroderma Community? Become a Member of the National Scleroderma Foundation 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
	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 Sponsor, Horizon Therapeutics!
	Now Accepting Applications for the 2022 Pre‑Doctoral Summer Fellowship Awards Application Deadline: Friday, April 29, 2022, 5 p.m. Eastern The goal of the National Scleroderma Foundation's Pre-Doctoral Summer Fellowship Award Program is to recognize PhD students conducting research related to scleroderma. Application eligibility, requirements, and instructions are on the Foundation's website: https://scleroderma.org/mentor-programs/ Questions regarding the Pre-Doctoral Summer Fellowship Award should be directed to research@scleroderma.org or (800) 722-4673. The Summer Fellowship Awards are made possible in part by a generous contribution from the Scleroderma Foundation Greater Chicago Chapter.
	National Volunteer Month In recognition of National Volunteer Month, we would like to highlight a few of our dedicated volunteers. We are honored to have Deborah Droux, Maria Tafoya, and Jacquie Martinez as a part of our New Mexico Support Community. These three have made great strides in expanding the foundation and driving our mission forward.
	#RAREis Scholarship Applications Are Open The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the #RAREis Scholarship Fund, a scholarship dedicated to the rare disease community. The #RAREis Scholarship Fund will award up to 53 $5,000 scholarships for the Fall 2022 semester. The scholarship application is open through April 22, 2022, at rarescholarship.org. The #RAREis Scholarship is available to applicants who are: Over the age of 17 Residents of the United States Diagnosed by a physician as having any form of rare disease regardless of treatment status. Undiagnosed patients are also encouraged to apply. Must be planning to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall 2022 semester. There are no minimum amount of credit hours to be part-time.
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