Hans Dooms, Ph.D.

2021 Research Grant Awards

Walter & Marie Coyle Research Grant, Hans Dooms, Ph.D., Boston University

The Walter & Marie Coyle Research Grant is named for two outstanding individuals who were among the founders of the Scleroderma Foundation. For more than 30 years, Walter and Marie were tireless volunteers for scleroderma. Marie is credited with being the architect of the Foundation's Peer Review Research Program.

The 2021 Walter & Marie Coyle Research Grant awardee is Hans Dooms, Ph.D., Boston University. His project is titled "Functional Characterization of Aberrant PD-1+TIGIT+T Cell Subsets Expanded in Systemic Sclerosis Patients." Learn more about this project and the other 2021 research grant recipients on the Foundation's website.

RESEARCH

Amy Gietzen

National Volunteer Month Meet the Scleroderma National Volunteer of the Year

We would be remiss if we let National Volunteer month end without highlighting the Scleroderma Foundation's 2020 National Volunteer of the Year, Amy Gietzen.  

Amy Gietzen partnered with the Scleroderma Foundation to create and facilitate an online community forum, Inspire SuperStarz, to allow young adults living with scleroderma to connect and offer support for their journey living with a rare disease. In 2019, Amy coordinated stronger connections online by sharing her perspectives and starting meaningful conversations with this group. Young adults regardless of location can now connect and offer mutual support. Thank you, Amy!

Read about other 2020 volunteer awardees:

VOLUNTEER AWARDS

The 20%: A Virtual Support Group for Males Living with Scleroderma

Scleroderma diagnoses are less common among men. In fact, only 20 percent of those who have scleroderma are males. If you, a friend or loved one falls into this category, the Scleroderma Foundation is here to support you.

We’re designing a support group especially for males with scleroderma. In it, you’ll learn scleroderma tips and resources and find support from others in your position. We’ve planned out a variety of topics, but we’d love to get your input on topic options, support group timing and more. If you’re a male with scleroderma, please complete our survey to help us decide the vision, structure and logistics of the group. Results are anonymous and will be shared with members during the first group meeting.

Complete the survey and keep an eye out for more details.

SURVEY

Now is the Time to Share Your Story

Now is the time to share your scleroderma story with your U.S. Senators before the fiscal year 2022 budget is submitted. Ask your Senators to work with their colleagues to support $5 million for scleroderma research again. Your voice matters!

You can help advocate for scleroderma research funding if you live in Alabama, Kentucky, Rhode Island, Arkansas, North Dakota, or Montana. Senators from these states are on the Congressional committee that makes these decisions. 

For more information, contact advocacy@scleroderma.org.

Find your Senators' contact information at: SENATE.GOV

Stepping Out 2021: Keeping Our Promise

Have you signed up yet for Stepping Out to Cure Scleroderma?

To find out more information on our upcoming walks, visit here.

Regardless of where you choose to walk, we are one community working together to “stomp out” scleroderma! 

We need your help—join us today!

STEPPING OUT

For Scleroderma, Algorithm Helps Better Screen for Fatal Complication

Pulmonary arterial hypertension occurs when blood vessels in the lungs are blocked or destroyed, which can cause the heart to fail.

Researchers at Michigan Medicine (Michigan University) found that an Internet application improved their ability to spot pulmonary arterial hypertension in patients with systemic sclerosis, or scleroderma. The unpredictable condition is marked by tightening of the skin that can damage internal organs. The algorithm, aptly named DETECT, outperformed standard methods used to identify the form of high blood pressure in the lungs that causes the heart to weaken and fail.

READ

Register for a Stampede Virtual Scavenger Hunt

Do you love raising money for Stampede Scleroderma? Searching for some healthy competition along the way? Join the Michigan Chapter for an upcoming at-home event that will bring laughter and fun all while raising funds to support the mission of the Scleroderma Foundation.

During our virtual Stampede Scavenger Hunt you’ll be up and moving around your home as we ask you to answer clues and search for items. Join us no matter what your ability of mobility might be. Sit back and laugh as everyone tries to successfully search for common household items.

Join us online, right from the comfort of your home on Wednesday, May 5 at 7pm for a night of fun. We suggest a $5 donation to Stampede Scleroderma and then register for the event via Zoom. 

If you need assistance or have questions, please email Laura Dyas at ldyas@scleroderma.org.

Ticket to Work: Healthcare and the Path to Employment

WEBINAR: Wednesday, April 28, 3-4:30 p.m. Eastern Time

Join the April Work Incentive Seminar Event (WISE) webinar and learn the myths about receiving Medicare and Medicaid while working. In addition, you'll understand Ticket to Work (Ticket) Program resources that can help Ticketholders as they make the decision to work, search for jobs and transition to the workplace. Specifically, the webinar will cover: How employment and earnings affect benefits; work incentives related to Medicare and Medicaid; and benefits counseling and Ticket Program services and supports.

REGISTER

BIPOC Virtual Scleroderma Support Group

ZOOM: Sunday, May 2, 4 p.m. Eastern Time

The Foundation started the BIPOC Virtual Support Group to address the needs of Black, Indigenous, and People of Color affected by scleroderma. Co-Facilitators are: Marilyn Sibley, Erion Moore, Demi Montgomery, Jacob Vidal Davila, Demetra Newton, and Sy Fuller.

If you have any questions regarding the BIPOC group, please send an email to SFinfo@scleroderma.org.

REGISTER

Meet the Experts: Going Virtual with Patients and Families

ZOOM: Saturday, May 15, 2021, 10 a.m. - 1:30 p.m. Eastern Time

The American Thoracic Society (ATS) Public Advisory Roundtable (PAR) is pleased to invite you to its 15th annual free patient and family forum. This year's talk will focus on patients and families and how they navigate health care access in a post-pandemic world. The panel includes Jaspal Singh, M.D., Samantha Connolly, Ph.D., Justin Ortiz, M.D., Neeta Thakur, M.D., Charles A. Powell, M.D., and DorAnne Donesky, Ph.D. This live virtual patient education event is being held in conjunction with the ATS 2021 International Conference. Morning talks will go from 10 a.m. to 12 p.m. Eastern Time. Afternoon breakouts will go from 12 p.m. to 1:30 p.m. Eastern Time.

REGISTER

Sunday Sitdown

FACEBOOK LIVE: April 25, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)

Join the Ohio Chapter for Sunday Sitdowns 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, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

COVID‑19 Information & Recommendations

Updated February 10, 2021

The American College of Rheumatology released clinical guidance on the COVID-19 vaccines. This information is available on the ACR website and has been added to the Foundation's website.

Information and frequently asked questions regarding the COVID-19 vaccines have been addressed by the Scleroderma Foundation's Medical & Scientific Advisory Board, to be used in consultation with your rheumatologist or other health care provider.

These guidelines, along with more information and recommendations for individuals affected by scleroderma about COVID-19 are posted at scleroderma.org/covid19. Please check this page from time to time for updates.

COVID‑19

Corporate Sponsors