World Scleroderma Day

Scleroderma Awareness Month is punctuated on June 29 by World Scleroderma Day, which commemorates Paul Klee, a gifted, abstract artist who died of systemic sclerosis on June 29, 1940. Join us in recognizing World Scleroderma Day and Scleroderma Awareness Month by sharing our #KnowScleroderma content on your social media. You can also join our virtual National Stepping Out to Cure Scleroderma and invite friends to join you in raising awareness by signing up at our website!

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

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!

Thank You to Our Awareness Month Sponsors

Thank you to Boehringer Ingelheim and Talaris Therapeutics, our Scleroderma Awareness Month Sponsors! We are grateful for your partnership as we work to help people better understand this rare disease and the lives it has impacted.

June's Scleroderma Proclamations

We would like to take a moment to celebrate everyone who is reaching out to their local and state officials to secure proclamations and resolutions that declare Scleroderma Days, Weeks, or Months. Once proclamations and resolutions are issued, they are posted on official websites and government dockets, touted on government officials’ social media, and announced on local news broadcasts. These proclamations land scleroderma squarely in the public record wherever they are issued. Mary Wheatley, IOM, CAE, CEO of the National Scleroderma Foundation, received a proclamation from the state of Georgia. If you are interested in learning more about our advocacy effort, visit our advocacy website.

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!

June Stakeholder Update Recap

National Scleroderma Foundation CEO, Mary J. Wheatley, IOM, CAE, recently reviewed key mission metrics with Foundation stakeholders. Watch this quarter’s update at the link below on our YouTube channel.

WATCH

Newly Diagnosed and Caregivers Virtual Support Groups

The National Scleroderma Foundation would like to invite members of our community who are interested in starting/joining a Newly Diagnosed or Caregivers virtual support group to please let us know! We will be creating a focus group for each support group to help determine best dates and times to meet, gauge participation, and to find leaders and co-leaders for the support groups.

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. An Established Investigator Awards was presented to:

DeAnna A. Baker Frost, MD, PhD
Medical University of South Carolina
New Investigator Award 

Topic: The Role of Estradiol Production in Systemic Sclerosis

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

RENEW Study Looking for Participants  

RENEW, a fatigue management intervention program at the University of Michigan, is looking for participants for an intervention study targeting problematic scleroderma symptoms. The study is open to all participants with a special interest in members of the BIPOC community.  During the study, individuals will be randomized into two groups. One group will receive the 12-week program with resources for symptom self-management right away, and the other group will be given access to the program after 12 weeks. The study will compensate individuals for their time.

To be eligible you must be:

• 18 years or older having fatigue that impacts your daily life and functioning 
• Diagnosed with systemic sclerosis (scleroderma) 
• Access to a computer and an internet connection 
• Ability to speak and read English

2022 National Day of Action

The 2022 National Day of Action is June 29. Watch our training on YouTube and Join our Day of Action on June 29.

Additionally, if you are curious what a typical meeting with an elected official looks like, watch our 2022 Advocacy Training 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

Ohio Sitdown

FACEBOOK LIVE: Sunday, June 26, 2022; 1 p.m. Eastern

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern 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

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.

Mogil's Mobcast 

On this episode of Mogil's Mobcast, Ann talks about Scleroderma Awareness Month and World Scleroderma Day. Additionally, she will share stories about health insurance and her difficulties with a doctor. You can listen to this episode, along with all of Mogil's Mobcast episodes, on Apple Podcasts.

LISTEN

The Scleroderma Body: Head to Toe Inside and Out featuring Dr. Maureen Mayes  

The symptoms of scleroderma vary greatly from person-to-person, and not all people with scleroderma develop all complications. Maureen D. Mayes, MD, MPH will reveal the symptoms of scleroderma that may be visible when the skin is affected, and the invisible symptoms as when internal organ systems are affected. Watch the educational webinar on the Texas Bluebonnet Chapter's YouTube Channel!

WATCH

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