National Scleroderma Foundation

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eLetter #962 | March 25, 2022

	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.
	2022 Scleroderma Research Grant Awards Research is an essential component of our Foundation and mission, which is why we increased peer-reviewed scientific research funding to $2.723 million annually, more than doubling our past commitment. In addition to advancing research funding, the Foundation also raised the grant award amount to $200,000 per award. For the first time in our history, we are excited to have 12 new research grant recipients, thanks to the generosity of donors. Four of these remarkable individuals received awards for making significant contributions to the scleroderma community. We are proud to announce this year's Scleroderma Research Grant Awards recipients are: Adri Chakraborty, PhD, Boston University, Recipient of Marta Marx Fund for the Eradication of Scleroderma Award Janet L. Poole, PhD, OTR/L, University of New Mexico Health Sciences Center, Recipient of the Mark Flapan Award Patrizia Fuschiotti, PhD University of Pittsburgh, Recipient of Walter and Marie Coyle Award Robert Lafyatis, MD, University of Pittsburgh, Recipient of Debra Lurvey Memorial Research Grant Award Monica Mukherjee, MD, MPH, Johns Hopkins University Kerri Ilene Aronson, MD, MS, Weill Medical College of Cornell University Peter James Niedbalski, PhD, University of Kansas Medical Center Research Institute Sean M. Fortier, MD, University of Michigan Karin Wuertz-Kozak, MS PhD MBA, Rochester Institute of Technology Deepa Soundara Rajan, MD University of Pittsburgh Yue Ding, MD, University of Toledo DeAnna A. Baker Frost, MD, PhD, Medical University of South Carolina To learn more about our research grant awards and recipients, visit here.
	Mogil's Mobcast Listen to the latest episode of Mogil's Mobcast. In this episode, Ann Mogilevsky speaks with Kerry Jeffrey, who is a clinical therapist with 3 autoimmune diseases. They will discuss the grief that can happen when diagnosed with a chronic illness, including the 9 possible stages of grief. Kerry explains what stages people might get people stuck and tips on how to move out of each stage. LISTEN
	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. The program encourages and fosters the next generation of researchers by cultivating students' early interests in working to discover the cause, understand the mechanism, and overcome scleroderma forever. Students may submit a proposal on research relevant to adult or pediatric 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 National Scleroderma Foundation Greater Chicago Chapter.
	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!
	Central PA Support Group Guest Speaker ZOOM: April 6, 7 p.m. to 8 p.m. Eastern The Central Pennsylvania Support Group will host Dr. Alan Baer from Johns Hopkins University on April 6. Dr. Baer will speak about Sjogren's Syndrome. To register for this virtual meeting, please email Dan Caruso at raeprod@yahoo.com or Michelle McPherson at sclerocentralpa@yahoo.com for the Zoom link. The presentation will end with a question-and-answer session.
	Call for Leadership Nominations Join the National Scleroderma Foundation Board of Directors in leading the Foundation into the future. 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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