National Scleroderma Foundation Upper Great Lakes

Mission

The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks.

Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma.

Description 

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as an autoimmune disease.

The word “scleroderma” comes from the Greek word “sclero”, meaning hard, and the Latin word “derma,” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease varies from individual to individual. Scleroderma is not contagious, infectious, cancerous, or malignant.

Any chronic disease can be serious. The symptoms of scleroderma vary greatly for each person, and the effects of scleroderma can range from mild to life-threatening. The seriousness will depend on the parts of the body, which are affected, and the extent to which they are affected. Currently, there is no cure for scleroderma, but there are many treatments available to help particular symptoms. 

Recognition

Hi, my name is Randy Slikkers, and I am the executive director of the Upper Great Lakes Chapter. On behalf of our staff, advisory council, volunteers, patients, caregivers, and families of those who live with scleroderma, I want to say thank you for considering us for your donation. I want to take a moment to tell you about the impact your donation has on our community. The best way I can do that, is to tell you about Michael. At his time of his diagnosis, he was told he had only one year to live so he should get his affairs in order. He wondered what would he do? Who would he turn to? None of his local doctors had ever treated anyone with scleroderma. His friends thought because he did not "look" sick, that we was simply seeking attention. Due to his chronic fatigue, he was let go from his job. His insurance would not cover his medication because it was not approved to use to treat scleroderma. He would have to travel two hours each way to the closest hospital that dealt with scleroderma patients for all his appointments. He was lost. Until he found the National Scleroderma Foundation. 

Fast forward ten years. Michael is now the leader of the only men's scleroderma support group in the world. He has received multiple awards from the Foundation for his volunteer work, and is a fierce advocate for those with the disease. What happened? Because of the generosity of our donors, we were able to help Michael. And now you can help others like him. Your donation will help us to provide:

A Bridge: The feeling of helplessness and loneliness upon diagnosis can be crushing. Our Peer Mentor Plus program provides free peer mentoring to walk step-by-step with each patient on their scleroderma journey.  This program helps those facing this difficult diagnosis have better outcomes when they can talk to other patients and family members who had the same or similar experiences. Peer mentors can create a safe place for patients to share their concerns, hopes, and fears about the healthcare journey.  

An Anchor: By providing on-going support in both a formal (support groups, one-on-one, small groups) and informal (social events, exercise/movement, meditation) settings, we ensure each patient and their family can stay grounded and get the help they need. As support is one of the main pillars of the National Scleroderma Foundation’s mission, we are happy to share that there are more than 100 Foundation-affiliated scleroderma support groups. Our support group leaders are trained volunteers who are committed to creating safe, welcoming and inclusive environments where all can share about their journey with scleroderma.

A Path: We provide many educational events throughout the year, ranging from our weekly Lunch & Learn program to our local, regional, and national conferences. We bring the leading scleroderma doctor's from around the world directly to our community so they stay informed on cutting edge treatments. 

Hope: The Foundation is the leading nonprofit supporter of peer-reviewed scleroderma research. Since its inception in 1998, the Foundation has committed has committed over $30 million to research. We will not rest until there is a cure for this terrible disease.

Again, thank you for considering us for your donor organization.