April 2022 Newsletter

National Scleroderma Heartland Chapter

Serving Patients, Caregivers and Families in South Dakota, Nebraska and Iowa.

Quote of the Day
Your Illness does not define you,
your strength and courage do.

Upcoming Events:

Iowa Support Group
Tuesday, April 12 at 6:30 Central, Every 2nd Tuesday of the Month
Topic: Handling real life – grocery store, working, etc
Join Zoom Meeting
Meeting ID: 87490361750
Password: 04122022
Dial by your location
+1 312 626 6799 US (Chicago)

Nebraska Support Group
Tuesday, May 17 at 6:30 Central
Topic: TBD

Jackie Hughes, Former Heartland Board Member and Current Omaha Support Group Leader

Volunteer of the Month
Jackie Hughes
A little about myself, I am married for 20 years and we have one 17 year old daughter. I like to speak about scleroderma anytime I have a chance, I like to read, and I like to hang out with my family. One other thing I will tell you is I do a patient panel at Nebraska Medicine every year. For second year med students I am a patient they get to meet and hear about my story with Scleroderma.
I was diagnosed with Scleroderma in early 2013. I progressively got worse. My Dr’s here in Omaha were unsure what to do as no medication was helping. We did some research and found a Dr to see in Houston. Her only diagnosis for me was a stem cell transplant. So in December of 2013 I went to Houston to MD Anderson to have the transplant. Though A LOT of ups and downs, I made it back to Omaha around February. But let me repeat when I say a lot of ups and downs. I got an aspergillosis pneumonia that really took me backward. So not only was I recovering from the transplant I was recovering from the pneumonia too. A stem cell transplant is not a cure, but is a treatment to hopefully stop the progression of the disease I have been doing ok since the transplant. I got to “retire” some of the equipment I needed to use. I still see my Dr in Houston once a year. I still take all of the medications I was on, but at least so far I can live with it. I am a big advocate for spreading the word of Scleroderma. If you ever want to chat, please reach out. Heartlandchapter@scleroderma.org
We need a cure

Online Fundraiser for Scleroderma

Stepping Out Heartland
June 25, 2022
Please plan to support our virtual Stepping Out Heartland Fundraiser. WE NEED A CURE!
Registration for Teams is Open NOW at
Heartland is hoping to contribute to the National Scleroderma Foundation’s pledge to give Two million dollars towards Research to Find a Cure.
The Heartland chapter hosts annual Stepping Out to Cure Scleroderma walks, which are a signature fundraising event of the National Scleroderma Foundation. These events provide an opportunity for individuals and families affected by scleroderma to take action against the disease while supporting their loved one. Thank you to all participants and donors for your flexibility in adapting to the virtual environment and continuing to support the Foundation’s mission.

For those participants who register a Stepping Out Team and begin fundraising by June 1, 2022, they will be entered in a giveaway to win a $100 VISA gift card.
Please help us raise money for a CURE!