In Recogintion of Juneteenth

Juneteenth represents a day of National Indepence and freedom. We would like to take this opportunity to reflect and recognize the strength of our BIPOC community members.

If you are a member of the BIPOC community living with scleroderma, please consider joining our BIPOC support group. You can learn more about our BIPOC support group on our website.

Please note Foundation offices will be closed on Monday, June 20 in observance of this holiday.

Pride Month and Scleroderma

The National Scleroderma Foundation celebrates pride month, which coincides with Scleroderma Awareness Month each June, and stands with LGBTQ+ members of our community across the country. If you are interested in starting / joining an LGBTQ+ scleroderma support group, please let us know!

Father, Hero

"My father is an absolute hero. He endured more than anything anyone could ever imagine and he fought so hard.” 

The National Scleroderma Foundation is grateful to Amanda Cobb for sharing her father’s story so that, together, we can increase awareness of scleroderma and overcome it once and for all. 

Learn more about Sam Cobb's journey with scleroderma at the story on our website.

READ

Join the Fun and Walk With Us

There is still time to join the fun and participate in a Stepping Out To Cure Scleroderma walk! If you don’t have a local walk near your area, please join us by taking part in the virtual National walk. We are thankful for changemakers like you who are helping us fight to cure scleroderma! Find a walk near you on our website.

Conference Registration is Now Open 

You can now register for the 2022 Virtual National Scleroderma Conference. The conference will take place July 15-17 and will feature 30+ scleroderma-focused sessions presented by experts from across the country. Stay up to date on conference news by signing up to receive National Scleroderma Conference eAlerts.

REGISTER

Thank you to our Patron Sponsors!

Giving Back in New and Exciting Ways

"I have been broadly aware of the various avenues for research funding advocated by the National Scleroderma Foundation, but I only became aware of the Congressionally Directed Medical Research Programs’ (CDMRP) Scleroderma Research Program (SRP) specifically upon being nominated by the foundation to join the program in 2021. Joining the CDMRP review process was at once intimidating, inspiring, and exciting. I was grateful for the opportunity to provide a voice for scleroderma patients in the scientific review process." - Nikhil Bhat, Consumer SRP

To learn more about Nikhil Bhat's experice, visit the link.

READ

Showcase Your Company at the National Scleroderma Conference 

The deadline for exhibitor booth registration at the National Scleroderma Conference has been extended to June 30. It is a great opportunity to put your branding, products, and services in front of hundreds of conference attendees. You can use this online form to get started today!

To Know Scleroderma is to Advocate for a Future Without Scleroderma 

"I always wanted to write my mom a song. She was very supportive in my music, very supportive in my career, and she was my inspiration, honestly. I was able to write her this song and when we found out about her scleroderma, and then she passed, it connected the dots for me." Ashley Barron, Celebrity Ambassador, diagnosed at 5 years old. #KnowScleroderma  

Share our awareness posts throughout June on Facebook, Twitter, LinkedIn, and Instagram.

Become a Member 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

Help Advocate for Strong Federal Funding 

June is the perfect month to take action as a scleroderma advocate and push for scleroderma research funding! Find out about our Action Alert and our campaign to urge our elected officials to support the inclusion of scleroderma in the Department of Defense’s eligible conditions list for Fiscal Year 2023. Our success will mean that scleroderma researchers will be able to compete for federal funds that will help support their groundbreaking work.

Your part in the campaign is easy. Just use the link below, read about our ask, and complete the built-in form that will send letters right to your Senators and ask them to support strong federal funding for scleroderma research. We encourage you to take action by June 30, 2022. 

TAKE ACTION

Research Grant Awards Highlight 

The 2022 research grant cycle set a record for the number of applications received and the amount of funds awarded. One of our Established Investigator Awards was presented to:

Yue Ding, MD
University of Toledo
New Investigator Award 

Topic: “The Development of TRPM8 Targeted Therapy Against Raynaud’s Phenomenon”

You can learn more about our research grant awards and recipients here.

II Scleroderma International Conference 

ZOOM: June 29, 2022; 10 a.m. Mountain 

We invite you to join the II Scleroderma International Conference via zoom. This event will be held in Spanish and English. 

SIGN UP

Caregivers Connection Support Group

ZOOM: June 18, 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.

Teens & Parents Support Group (New Day and Time)

ZOOM: Wednesday, June 29, 2022; 11:00 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 Wednesday via Zoom at 6:00 p.m. MT. 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.

Now Accepting Scleroderma Research Grant Applications 

If you hold a faculty-equivalent position and are newly pursuing a career in scleroderma-related research, apply to our New Investigators Grant. Anyone who is an established researcher both inside and outside the field of scleroderma research who wishes to propose pilot studies to obtain preliminary data dealing with a highly innovative and/or highly relevant theme related to scleroderma should apply for our Established Investigator Grants.

To learn more about our research grants or apply, visit our website. We will accept applications until September 15, 2022.

Ticket to Work Webinar

How can work affect your mental health? Employment offers the opportunity to use your skills and talents, while new accomplishments boost your self-confidence. If you’re wondering if work is right for you, Ticket to Work service providers can help you explore your work options. Join the next Work Incentive Seminar Event (WISE) webinar on June 22 at 3 p.m. Eastern to learn how Social Security’s Ticket to Work Program can support you on your path to employment.

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