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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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Welcome to the Minnesota Chapter Website!

We are dedicated to providing support for people living with scleroderma, caregivers, and the general public. We want to help enhance the quality of life for patients

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SAVE THE DATE!

Calling all runners! We're running the Grandma's Marathon in Duluth on June 22. Register or donate to join Team Carole and support scleroderma research. Learn more at: https://www.crowdrise.com/o/en/campaign/scleroderma-foundation-grandmas-marathon-2019

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Join us on July 28, 2019 for the annual Stepping Out to Cure Scleroderma Walk at Lake Phalen in St. Paul. Register now or make a donation for the 2019 5k/walk!

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Our 2019 Health and Wellness Conference will be on October 19, 2019 at the Minnetonka Community Center. More information will be on its way soon, so stay tuned!

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About Us

Our Mission:

The mission of the Scleroderma Foundation Minnesota Chapter is threefold:

  • To provide educational and emotional support to people with scleroderma and their families;
  • To stimulate and support research designed to identify the cause and cure of scleroderma as well as improve methods of treatment and;
  • To enhance the public’s awareness of this disease.

 

 

 

 

 

Contact Information:

Scleroderma Foundation, Minnesota Chapter
P.O. Box 240244
Apple Valley, MN 55124

Phone: 877-794-0347
Email: MNChapter@scleroderma.org

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Board of Directors: 

Meredith Allister, President
Dawn Matuza, Vice President
Deborah Orman, Secretary
Bonnie Handmacher, Treasurer

Andrea Bond
Elaine Robashkin
Sue Zeigler
Renate Melillo
Eva Felix
Kara Luebke

Dr. Jerry Molitor, Medical Advisor

Breaking News: New Support Group!

Brainerd.jpgHey, Brainerd residents, we have a new support group created just for you! We are constantly amazed by the drive, kindness and selflessness of the Scleroderma Foundation support group leaders, and no one embodies all of those qualities more than Amy Jensen, who launched the Brainerd Support Group in November 2018. 

We chatted with Amy and asked her about her inspiration, mission and goals for the Brainerd Support Group. Read on below!

1. Why did you choose to start a support group in the Brainerd area? 
“I started attending the West Metro (in Edina) support group a couple of years ago, after officially receiving my diagnosis. I had been skeptical about attending a support group, thinking that it would have the potential to be a negative or depressing experience. To my pleasant surprise, attending a support group was a very positive experience, where I was able to ask other group members about their experiences and learn more about scleroderma and how it affects each person differently. My husband and I relocated to the Brainerd area from the Twin Cities in Spring 2018. I volunteered to start a support group here, in hopes to provide a similar experience to others who are going through scleroderma.” 

2. How many members did you have when it started? Is it growing and where are you at now? 
We had four of us (including my husband and me) at our very first meeting in November 2018. We continue to be at four members but are hoping to grow as the word spreads about our group. I recently contacted a large health system in the area, and they printed our support group information in their provider newsletter. We are continuing to look for other ways to spread the word.” 

3. What kinds of activities and events do you participate in? 
“With our support group, we have been focusing on getting to know and support each other and share information. As part of my personal journey with scleroderma since being diagnosed four years ago, I've attended the local Health and Wellness Conferences each fall, and the Stepping Out Scleroderma walks at Lake Phalen. My husband and I also went to the national Scleroderma Conference, which was an amazing experience.”

4. What has been the most rewarding part of starting the support group? 
“Providing a positive and safe environment for people with scleroderma.”

5. What are your long-term goals for this group? 
“My primary long-term goal for the group is to continue to grow awareness of scleroderma in the Brainerd Lakes area. Additionally, I hope this group serves as a social network so patients and their caregivers don't feel isolated in their journey.”

6. How has the group benefitted members? 
Being diagnosed with scleroderma can be scary. The support group is a safe place where members can share their experiences and ask questions. We keep it positive and supportive.”

Want to join this support group? Learn more about upcoming meetings on our Facebook page or on our website!

 

 

 


 

Karen's Scleroderma Journey

Karen“I was skiing in the UP of Michigan. I’d never had a problem with cold in my life. But I was just in tears, the cold was so painful,” remembers Karen of her first scleroderma symptoms. After two years of extreme reactions to cold, fatigue, and swelling, Karen was diagnosed with scleroderma in 2001.

Before scleroderma, Karen was extremely active. She worked full time in rehabilitation services and then healthcare marketing. Every year she took a mountain biking trip out west with her husband. She enjoyed hiking, book club, dinner club and was a member of the Twin Cities bicycling club.

As is the case with each fighter, scleroderma has taken a lot of her old activities from her. At first she says, “I was in denial. I was in denial for a long time. I didn’t think it would last, no matter what I read. At the time doctors didn’t know a whole lot about it. I couldn’t say the word for two years without crying. It was devastating.” Her low point came later in 2008. She contracted pneumonia and spent two months in the hospital on a ventilator. Her lungs had shut down. Many thought she wouldn’t survive, but she says, “I came out on the alive side.”

She spent years recovering from the bout with pneumonia. She stopped working, needed a walker and oxygen. Slowly, she improved. But life with scleroderma is markedly different from her life pre-diagnosis. Small things, like going down the stairs, depend on her oxygen supply. Her ability to travel is limited.

But Karen is coping and has found joy in new activities. In 2009, she moved to Florida for winters to escape both the cold and flu that come with Minnesota winters and the scleroderma symptoms exacerbated by extreme cold. And, she “LOVES it.” She took up kayaking – something she can do with oxygen – and made new friends in Florida. Since 2009 she has lead one of Scleroderma Foundation Minnesota Chapter’s support groups in order to give back. She says she encourages scleroderma patients to stay active as much as possible. She enjoys both Zumba and yoga. Her advice to those newly diagnosed is to “Find a good doctor, and surround yourself with people who care.”

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Her latest journey was undergoing a stem cell transplant. Denied from the program in 2014, she reapplied in 2016 and was accepted as a candidate. She spent 6 weeks in Chicago for the transplant, which involves chemotherapy to remove a patient’s immune system. The immune system is then “regrown” from their own scleroderma-free stem cells. “It was very invasive and awful to go through. Lots of chemo. But I came out on the better side. I noticed changes right away when I was in the hospital. I noticed skin and tissue softening. I wasn’t coughing as much - I used to be coughing every 30 seconds.”Karen discharge day

And Karen’s hopes for the future? “I hope more and more people will reach out to the Scleroderma Foundation and learn what is available, educate themselves, get themselves to a support group. And, I hope more rheumatologists and primary care doctors learn about the disease and can recognize it more quickly. [Scleroderma] is a disease that deserves more dollars to look for a cure - something that can halt this disease in its tracks.”

Thank you, Karen, for your bravery, giving back to the scleroderma community as a support group leader, and for sharing your inspirational story.

 


 

A very special thank you to our 2018 sponsors!

National Sponsors

Actelion Logo
Boehringer Ingelheim 2018 Platinum National Sponsor
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2018 High Stepper Sponsor

Ergodyne

2018 Conference Sponsors

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Capp Industries and Affiliates


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