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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: Imporant information regarding mask wearing for people with scleroderma and the CDC guidelines, from the Foundation's Medical & Scientific Advisory Board. (Updated May 17, 2021)

Stepping Out to Cure Scleroderma Walk

 

 

 

 

 

 

 

 

 

 

 

 

Save the Date: Our 9th Annual Sclero-What? Scleroderma Regional Education Day will be held on October 9th, 2021

 More information to come soon!

Thank you for making our 2021 Stepping Out to Cure Scleroderma Fundraiser a success!

The summer fundraiser was held on June 12th, 2021.  If you missed the event but would still like to donate to support the work of the Heartland Chapter, it is not too late!  Donate securely today on our Stepping Out to Cure Scleroderma website.

Your donations go towards: 

#1: Research to Find a Cure
#2: Scholarships for Heartland Members to Attend the National Patient Education Conference
#3: Support Groups that connect members to local resources, helping both newly diagnosed and long-term patients with Scleroderma
#4: Education Day for Patients, Family, and Friends in the Heartland
#5: Increased Awareness of Scleroderma 

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

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 102
Grimes, IA 50111-4995

The Heartland Chapter P.O. Box is checked once per week.  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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National Sponsors
 
Platinum Corporate Sponsor

Janssen
 

Gold Corporate Sponsor

Boehringer Ingelheim Plain
 

Silver Corporate Sponsor

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