National Scleroderma Foundation

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eLetter #964 | April 8, 2022

	New Research Researchers’ findings open a new direction for developing a future therapy against scleroderma. Working with skin samples, a team led by Prof. Ido Amit, PhD, Weizmann Institute of Science, and Prof. Chamutal Gur, PhD, Hadassah Medical Center, identified a subgroup of fibroblasts (previously thought of as “scaffolds” holding cells in place) whose concentration drops sharply in the early stages of scleroderma. Their findings were published in “Cell,” a scientific journal. Drs. Amit and Gur received the largest funding possible from the National Scleroderma Foundation under the "Established Investigator" category. They shared their findings during a recent “Advances in Scleroderma Research Global Webinar,” a Foundation-supported program to share real-time scientific knowledge about scleroderma. Read a layman’s summary of their findings here.
	Research Grant Awards Highlight: The 2022 research grant awardees set a record for the number of applications received and the amount of funds awarded. The highest scoring proposal was selected to receive the Marta Marx Fund for the Eradication of Scleroderma which was awarded to: Adri Chakraborty, PhD Boston University New Investigator Award The Role of Lymphatic ERG Deficiency on Pulmonary Fibrosis 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 2nd CoVAD 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
	Fenómeno de Raynaud El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su reunión vía zoom “Fenómeno de Raynaud”, el próximo 9 de abril del 2022 10:00 am (México) (Colombia) (Ecuador) 11:00 am (Bolivia) (USA) 12:00 pm (Argentina) 6:00 pm (España) Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com antes de la reunión. A continuación, vínculo para registrarse al evento. REGISTRARSE
	Virtual Brand Launch on April 21 The National Scleroderma Foundation invites you to our Virtual Brand Launch event on April 21 from 6:00 - 7:30 pm ET. Join us in celebrating and discussing our new brand and on-going work as a foundation. As a fun addition, we will have breakout sessions during the event to discuss our Foundation and meet our community members in a small group setting. We look forward to seeing you and hope you will join us for our Virtual Brand Launch event. Stay tuned for more information. REGISTER
	SYNC-Scleroderma Young Adults Needing Connection Friday, April 15, 2022, 7pm EST Topic: Nutrition and Exercise Time: Apr 15, 2022 7:00 PM Eastern Time (US and Canada) Join the Zoom Meeting. REGISTER
	"Never Give Up" Officially, Esthela Núñez Franco was diagnosed with scleroderma in January 2021, but she experienced symptoms for more than 20 years. Read Esthela's journey and her encouraging words to all affected by the disease. READ
	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 As we begin National Volunteer Month, we would like to take this opportunity to thank all of our volunteers for your tireless support of the National Scleroderma Foundation. Through chapter leadership, fundraising, education, advocacy and support, you have helped us grow year after year. We could not achieve our goals or advance our mission without your efforts. We thank you for your services and look forward to all the success we accomplish as a united organization.
	Call for Leadership Nominations Do you have thoughts and ideas on how to help the Foundation meet its mission? Are you passionate about serving the community of people affected by scleroderma? Are you a strategic thinker focused on outcomes? Consider serving on the National Scleroderma Foundation Board of Directors. This year, the Board is focused on recruiting leaders with specific expertise in research, philanthropy, awareness building, and grassroots events strategy. Candidates from the Midwest and West are strongly encouraged to apply to ensure a good balance in terms of geographic distribution of the board. In addition, the Board is interested in recruiting new members with diverse backgrounds and perspectives, as well as new voices. The position description for board members is available here. Pending approval, new board members will begin service July 1, 2022, and serve a three-year term to end June 30, 2025. Applications are due online by 5 p.m. Eastern on Friday, April 15, 2022. NOMINATIONS
	Anna Belle Carter Memorial Scholarship Anna Belle Carter was a wonderful 13-year-old living a full life with scleroderma when she passed away in July 2020 from COVID-19. The Anna Belle Carter Memorial Foundation was established by her family to financially assist deserving students who are affected by scleroderma in furthering their education goals at an accredited college, university, or technical school to attain an undergraduate degree, an initial graduate degree, or certification. The ABCMF awards scholarships on the basis of academic potential and demonstrated achievement, exemplary citizenship, personal character, and need. Read complete application criteria. Download an application. All applications are due by April 15, 2022, to be reviewed and awardees selected by May 4, 2022. READ
	#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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