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| eLetter #961 | March 18, 2022 |
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The 2022 National Scleroderma Conference Will Be Virtual
We are excited to announce that the 2022 National Scleroderma Conference will be held virtually July 15-17!
While we were looking forward to seeing everyone in Seattle, we have pivoted to a virtual conference to ensure that our attendees have a safe and engaging experience. All of the high quality programming that you have come to expect will be accessible with the click of your mouse, and we’re planning to introduce some fun ways for you to interact with your peers from across the country.
Stay tuned to our website and be sure to sign up for our conference E-Alerts for more information about the virtual platform, programming and registration. Addressing your needs is what the conference is all about, so please share your thoughts about the information that you need to live your best scleroderma life. Email your suggestions and programing ideas to Sfinfo@scleroderma.org. We can’t wait to see you this summer!
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Finding Your Best Path
“While no two journeys are the same, the National Scleroderma Foundation can help those living with scleroderma connect with the resources they need to find their best path and live better with scleroderma.” Hear a message from CEO Mary Wheatley about our recent brand evolution.
WATCH
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Mogil's Mobcast with Dr. Leader and Kelly Jeffrey
Listen to the latest episode of Mogil's Mobcast. In this episode, Ann chats with Dr. David Leader, D.M.D., M.P.H., the director of the Tufts University School of Dental Medicine DMD/MPH Dual Degree Program. Dr. Leader is also a nationally recognized expert on scleroderma and oral health. During the podcast, they discuss how the mouth and skin changes with scleroderma, the effects of medication, periodontal disease, dry mouth, and adaptive equipment.
On the next episode, Ann Mogilevsky speaks with Kerry Jeffrey, who is a clinical hypnotherapist, counselor and life coach with multiple 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
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Share Your Experiences of Raynaud and Digital Ulcers
Individuals who have scleroderma and experience Raynaud Phenomenon and digital ulcers are invited to participate in a study led by the Scleroderma Vascular Disease Working Group of OMERACT, an international initiative of health professionals established in 1992 to improve outcome measurement in rheumatology. All answers are confidential. The survey takes 20 minutes to complete. You must be 18 or older, have scleroderma, and experience Raynaud Phenomenon with or without digital ulcers. There are two rounds of the survey.
RAYNAUD SURVEY
DIGITAL ULCER SURVEY
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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: www.scleroderma.org/fellowship
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.
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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!
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National Advocacy Committee
The National Advocacy Committee is launching its 2022 initiatives and is looking for advocates to help reach our goals! Please contact team leads if you would like to learn more about the Committee’s work on:
One of these teams may be the perfect opportunity for you.
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Caregiver Connection
ZOOM: March 19, 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.
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Teens & Parents Support Group
ZOOM: March 26, 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.
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Central PA Support Group Guest Speaker
ZOOM: April 6, 7 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.
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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
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The 20%: A Virtual Support Group for Males Living with Scleroderma
Topic: Managing Sleep Challenges
The National Scleroderma Foundation Michigan Chapter is back with a March virtual support group to support men with scleroderma in our community. Join our "Managing sleep challenges" discussion on 3/23 from 7:00 to 8:00 p.m. Eastern Time. We’ll provide an overview of how scleroderma impacts sleep, explain common sleep difficulties and offer ways to improve your sleep quality. There will be time at the end to have your questions answered, too. Register now and find support and hope in the community.
Register
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Advances in Scleroderma Research - Global Webinar
ZOOM: April 1, 2022; 11 a.m. - 12:30 p.m. Eastern
The goal of the Advances in Scleroderma Research - Global Webinar is to rapidly disseminate knowledge by promoting awareness of new advances, fostering new collaborations, creating new networks, encouraging early-stage investigators, and inspiring interested learners. Participation is free of charge and open to all interested scleroderma researchers, including trainees.
Speakers & Topics:
Ido Amit, PhD, and Chamutal Gur, PhD, Weizmann Institute of Science (Israel)
Victor J. Thannickal, MD, Tulane University (USA)
Paul Hiebert, PhD, ETH Zürich (Switzerland)
REGISTER
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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
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#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 today, March 18 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 is no minimum amount of credit hours to be part-time.
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2022 Women’s Health Innovation Forum Series
This year’s Women’s Health Innovation Forum Series is highlighting investment and the voice of the patient in all areas of women's health. Join Springboard Enterprises’ Women’s Health Innovation Coalition (in partnership with Roche and Organon) for their first event of the series, focused on Autoimmune health on Wednesday March 30th at 12pm ET and hear from the incredible speaker lineup below:
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Disclaimer: The National Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
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