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Our chapter offers support groups, events and other resources for people living in Nebraska, Iowa, and South Dakota.
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COVID-19: Information and frequently asked questions regarding the COVID-19 vaccines have been addressed by the Foundation's Medical & Scientific Advisory Board. (Updated February 10, 2021) Read More

Stepping Out to Cure Scleroderma Walk

 

 

 

 

 

 

 

 

 

 

 

 

The 2021 Heartland Stepping Out to Cure Scleroderma Fundraiser is happening NOW until Saturday, June 12th, 2021

The fundraiser has three parts. You can participate in one, two, or all three of the parts below! 

PART 1: DONATION
Register here to set a fundraising goal and create a team web page. Share your team web page with family, friends, and other connections to request donations. You may also donate by mail or by phone. Please also consider asking local businesses to sponsor the event.

PART 2: AWARENESS
Take a photo or video of yourself - and anyone else you would like with you - walking outside. Anytime between now and June 12th, post on Facebook with a message about Scleroderma awareness. Tag the Scleroderma Foundation Heartland Chapter in your post by typing @scleroderma.org.

PART 3: CELEBRATION
Join us on Zoom Saturday, June 12th, 2021 at 11AM for a socially-distanced celebration!
 
 

New Additions to the Resource Tab

We want to make it easy for you to be informed and actively involved in our Chapter.  This is why we have created a RESOURCES tab, which includes Fundraising and Educational material.  Please view our Chapter resources, which have recently been updated with new information just for you!

 

Resources

Fundraising Resources

Our fundraising efforts are essential to raise money for research to find a cure for Scleroderma.  Money donated to the Heartland Chapter also helps us provide local services to patients and families, including hosting support groups, organizing a regional Patient Education Day, and providing scholarships for members to attend the Scleroderma Foundation National Education Conference.  Our primary fundraiser is the Stepping Out to Cure Scleroderma Walk, which occurs annually every June. 

Education Resources

Our Chapter provides honest and practical information to people living with Scleroderma, and their friends and family.  We strive to keep our members informed of cutting-edge research and the latest treatment options.  Our Chapter also seeks to raise awareness about this rare disease within the general public.  Our primary education event is the Heartland Chapter Sclero-What? Education Day, which occurs annually every October. 

  • Scleroderma Foundation YouTube Channel - a collection of educational videos posted by the Scleroderma Foundation.  Includes recordings of event sessions from past National Patient Education Conferences.
  • 2020 Heartland Education Day Playlist - session recordings from the 8th annual local patient Education Day.  
  • 2018 Heartland Education Day Playlist - session power point slides from the 6th annual local patient Education Day.
  • ClinicalTrials.gov - a searchable database of clinical trials managed by the U.S. National Institutes of Health.  Clinical trials are how new medical treatments are tested for efficacy and, hopefully, approved for use.  Scleroderma trials are essential to better manage, and eventually cure, the disease.  *Download a PDF list of clinical trials in Scleroderma, as of January 2021. 

Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials or studies referenced here. 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 for proper evaluation and treatment.

 

About Us

Board of Directors:

Officers:
Lacey Bodnar, President
Rebecca Gaw, Vice President
Open Position, Secretary
Stephanie Fragale, Treasurer

Members:
Karen Fragale
Victoria Seaman
Lindsey Bodnar
Michelle Brown

Medical Advisory Panel:
Marcus Snow, M.D., Rheumatology, UNMC
Joseph Nahas, M.D., Rheumatology, CHI Health
Alex Hewlett, D.O., Gastroenterology, UNMC
Tammy Wichman, M.D., Pulmonology, UNMC
Haitam Buaisha, M.B.B.Ch., Gastroenterology, CHI Health

 

Contact Information

Chapter Contact:
Email: HeartlandChapter@scleroderma.org

Phone: (515) 661-8089

Chapter Mailing Address:
Scleroderma Foundation Heartland Chapter
P.O. Box 747
Gretna, NE 68028

The Heartland Chapter P.O. Box is checked every Monday afternoon.  If you are sending mail that is urgent or time sensitive, please consider notifying us via text, call, or email, so that we may pick up your mail as soon as possible. 

New board members are welcome! To apply, simply complete the Prospective Board Member Information Form and email to HeartlandChapter@scleroderma.org.

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Make life-long friends, learn about local events, and receive updates on local and national scleroderma news. Connect with us on Facebook, Twitter, and LinkedIn.

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National Sponsors
 
Gold Corporate Sponsor

Boehringer Ingelheim Plain
 

Silver Corporate Sponsor

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