New banner walk photo 2

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

New banner walk photo 1

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

2017 Walk Slideshow image 5

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

2017 Walk Slideshow image 4

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

2017 Walk Slideshow image 2

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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Springtime Social at Surly Brewing

When: May 14, kick off at 6:30pm
Where: Surly Brewing 520 Malcolm Ave SE, Minneapolis, MN 55414

Come out and party with Scleroderma Foundation MN Chapter! The night will be led by MC and trivia master John Cosgrove of Cosgrove Presents. Enjoy trivia, appetizers, and a live performance by indie band No Time for Fame. Drinks will be available for purchase. We can't wait to see you there!

Are you interested in volunteering for this event?  Please contact our Event Director, Jane Stacy at (612)790-9044, or jastacy@comcast.net. 





Save the Date

Stepping Out to Cure Scleroderma Walk 2018 - our date is confirmed, same location as last year!

When: Saturday, July 21, 2018
Where: Phalen Regional Park 1600 Phalen Drive, St. Paul, MN 55106


 

 

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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
Eva Felix, Vice President
Kara Luebke, Secretary
Bonnie Handmacher, Treasurer

Andrea Bond 
Dawn Matuza
Elaine Robashkin
Sue Zeigler                                                                            Deborah Orman                                                                    Renate Melillo

Dr. Jerry Molitor, Medical Advisor

Nanci's Story: Becoming a Support Group Leader

Nanci - smallerYou are not alone.

Living with a chronic medical condition can be lonely. It can cause insecurities, apprehensions, depression and fear. For many of us, scleroderma is an invisible illness and it is not easily understood by others. It is for these reasons that I became involved with a support group.

Scleroderma can be difficult to diagnose, and for some, like me, it is a relief when you find out what is wrong. My first symptoms surfaced in 2003 but my disease was not advanced enough to receive any definitive answers from doctors. I went to a rheumatologist for the first time in 2007 and again, my symptoms and testing did not provide any answers. Finally in March, 2011 I was diagnosed with limited systemic sclerosis and later in 2016 I was diagnosed with rheumatoid arthritis.

The first year and a half following my diagnosis in 2011 I did a lot of research online and educated myself on the disease. In 2012/2013 I began getting involved in activities coordinated by the Scleroderma Foundation – Minnesota Chapter like the annual walk and educational seminar and I also started attending the West Metro Support Group. It was a great experience and I met a lot of wonderful people but the drive to get there from my north metro home was very stressful and long. So, after some encouragement from some West Metro Support Group participants, I decided to become a support group leader myself and I started the North Metro Support Group.

The first meeting of the North Metro Support Group was held on November 12, 2014 and guess what? No one showed up. My wonderful husband and I sat at the first several meetings by ourselves before I finally got my first group member. It was a wonderful day. The group continued to grow very slowly throughout 2015 and 2016 but really began to flourish in early 2017 (hmmm, is that a good thing or a bad thing?). I now have a nice solid group of attendees who I have become attached to and look forward to seeing every month.

Becoming a support group leader was scary because I had never led a group on my own before. Back in my working days as an Executive Assistant I made some presentations and had some leadership roles from time-to-time but what I find that helps me the most in my role as support group leader is my strong organizational skills, knowing how to plan ahead, having confidence in myself and enjoying meeting and getting to know new people. The Scleroderma Foundation also provided some great educational materials for dealing with group dynamics, topic ideas and other tips on leading a group.

Support groups are important when you live with a chronic illness. We help each other, we understand each other when others don’t, and we learn from each other. It is like we have a language of our own that only those of us who live with scleroderma know.

One of the most rewarding things for me as a support group leader is being able to help people and to bring people together. I recently had a newly diagnosed person reach out to me via the email address that is posted for the North Metro Support Group on the Minnesota Chapter’s website. She was looking for a recommendation for a dentist who has worked with scleroderma patients. I quickly sent an email to my support group members asking them if they were willing to share their dentist’s name with me. I forwarded the information I received to the gal who inquired and she went and saw one of the dentists and she was very appreciative for the referral. I met the gal we were able to help at the Scleroderma Walk and she is now a member of my support group.

More information on support groups can be found on the Scleroderma Foundation – Minnesota Chapter’s 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.”

Karen kayaking

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 generous sponsors 

National Sponsors

Actelion Logo
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Reata 2017 logo

2017 High Stepper Sponsor

Ergodyne

2017 Conference Sponsors

Cargill logo

Capp Industries and Affiliates


Streamworks logo

 

Dalseth Family & Cosmetic Dentisty

Orono Dental Care

Valley Dental Group

Liska & Hovland Dental

 


2017 Walk Sponsors

WCCO logo

 

Streamworks logo

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Chippewa2015
O'Leary's Pub