| Homepage | Forward to a Friend | Make a Donation |
|
| eLetter #962 | March 25, 2022 |
|
 |
Stakeholder Update Recap
If you missed the recent Stakeholder Update with CEO Mary Wheatley, you can watch it now on our YouTube channel. During this month's update, Mary reviewed progress to date on the strategic plan and key metrics. She also announced that the National Scleroderma Conference will be virtual this year.
WATCH
|
 |
WISE Webinar for Social Security’s Ticket to Work Program
March 30, 3 p.m. to 4:30 p.m. ET
Social Security’s Ticket to Work Program presents the "Choosing a Service Provider That’s Right for You" webinar on March 30. During this webinar, you will learn how Ticket Program service providers can help you reach financial independence through work. They also inform viewers of the free services and supports available through Ticket Program service providers, and tips on selecting the right one for your needs. This is a live, interactive event where the audience can submit questions, get guidance, and get started!
SIGN UP
|
 |
Giving Hope
Emilie Grace Julian, a 12-year-old affected by scleroderma, loves playing the trumpet and hopes to learn to play other instruments. She credits Louis Armstrong as one of her biggest inspirations. Thank you, Emilie, for sharing your story with us.
WATCH
|
 |
Sunday Sit-down
FACEBOOK LIVE: March 27, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)
Join the Ohio Chapter for Sunday Sit-downs on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.
Please note, given the open, unsecured nature of Facebook, do not share private, personal information during this conversation.
WATCH
|
 |
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.
|
 |
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
|
 |
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.
|
 |
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.
|
 |
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
|
 |
Advances in Scleroderma Research - Global Webinar
ZOOM: April 1, 2022; 11 a.m. to 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
|
 |
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.
|
 |
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 Health Innovation Coalition (in partnership with Roche and Organon) for their first event of the series, focused on Autoimmune health, on Wednesday, March 30 at 12 p.m. ET and hear from the incredible speaker lineup below:
|
| Advertisements |
 |
| |
 |
| |
|
|
|
|
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.
|
 |
|
