$5,649 raised by 42 donors
38% complete
$15,000 Goal
Your donation gets us one step closer to our goal of raising $15,000 to fund the pursuit of our mission and expansion of our services in the greater Rocky Mountain region.
I am honored and humbled to be the Chair of the Rocky Mountain Chapter Advisory Committee serving those affected by scleroderma. When a family member was diagnosed, we were like many others receiving the news and wondering how to find out information around treatments, the disease itself, providers…. the gamut of the usual feelings and questions. We then learned of the Rocky Mountain Chapter of the National Scleroderma Foundation! It was through the Foundation that the information we were seeking was obtained and we were able to meet people with scleroderma and their caregivers going through the same journey as we were. The Foundation continues to serve the growing number of people diagnosed with scleroderma, their caregivers and families through support and education programs and fundraising for research to find treatments and possible cures which could lead to a better and longer life. I am proud to be a member and thankful for the Foundation, the Rocky Mountain Chapter and its members.
Mike Pursel - Chair of the Rocky Mountain Chapter Advisory Committee
The risks are always going to be growing for me until there is a cure or better treatments. Scleroderma is just a ticking time bomb for every single patient out there. It's hard to hear. And certainly harder to face. I still keep living every day as if I'm going to have a future, but I know that it's unlikely. When I see old people, I get jealous. I wish I could be at 85, or even 65, and have the usual complaints of aches and pains like they do. It was only several years ago that I discovered the National Scleroderma Foundation and the support groups. I know attend regularly!
Lauren H, Scleroderma patient
Scleroderma made my life do a 360° turn upside down. The National Scleroderma Foundation helped me by encouraging me to talk and knowing others are going through the same thing so they understand.
Bobbie Jo S - Scleroderma patient
Scleroderma has been life changing. It has affected my life in both a negative and positive way. The National Scleroderma Foundation has helped me become a more sensitive person and work harder to grow emotionally and spiritually.
June B - Scleroderma patient
Scleroderma has changed the path of my life. I try not to be limited by symptoms. The National Scleroderma Foundation and support groups have helped me tremendously. I have learned so much about the disease, helpful tools for management and the most knowledgeable doctors. Mostly, the Foundation has connected me to wonderful, caring people.
Sandee M - Scleroderma patient
I lost a son to scleroderma. He was diagnosed at 21 and passed at 37. He lived a very purposeful life and fought a good fight. It had affected his heart and he died of a heart attack. He would not tell me how sick he was so I would not worry. After he passed, I found out about the Foundation and learned more about the disease. I have volunteered for over 12 years in his memory and there has been a lot of advancement during that time.
Rita M - Family member
Scleroderma has changed everything in my life. It has affected the way I eat, sleep, and limited all physical activities. It has also made me appreciate life to the fullest. The National Scleroderma Foundation has helped me feel like I am not alone in this battle. I have also learned a lot about different treatments to best manage this disease.
Amy J - Scleroderma patient
Scleroderma has changed my life by limiting what I can do in some ways; but it has also given me the freedom to reach out to help others by leading the scleroderma support group in Grand Junction. The National Scleroderma Foundation has helped me become more aware of my body and how scleroderma may impact it. The National Scleroderma Foundation has provided lots of information that helped me and that I can share with others to help them learn too.
Garnet H - Scleroderma patient
Being a member of the National Scleroderma Foundation Rocky Mountain Chapter means having a place to meet other people who know what it's like to have scleroderma. The support group meets monthly and has programs bringing local and nationally known scleroderma specialists to make presentations, as well as pharmacists, nurses and other health-care professionals. In addition to programs, there is always time set aside to get acquainted with new members and to catch up with old friends...
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.
The National Scleroderma Foundation ("Foundation") was organized in 1998. Today the National Scleroderma Foundation has 16 active chapters and more than 160 support groups around the country.
The National Scleroderma Foundation-Rocky Mountain Chapter ("Chapter") was started in Colorado in 2001. Today it has support groups that meet regularly in Denver, Colorado Springs, Loveland, Utah and New Mexico. Due to COVID, the support groups are meeting virtually.
The Chapter partnered with Children's Hospital Colorado to host a program for teens and children with scleroderma - Kids Get Scleroderma Too - in October 2018. This national event featured pediatric rheumatologists and specialists from around the country who educated parents about having a child with scleroderma and taught coping skills and how to live with a chronic disease to teens and children.
The Chapter hosts numerous fundraising events annually including "Stepping Out to Cure Scleroderma" walks in Denver (since 2005), Fort Collins (since 2011) and Utah and "Food Fight for Scleroderma" chef competition in Englewood (since 2015). More than 70 Stepping Out walks are held every year around the country by Foundation chapters and local support groups.
These fundraising events not only support Chapter programs but also allow the Chapter to contribute to research at the National level to find the cause of and cure for scleroderma. The National Scleroderma Foundation's Peer Research Review Committee is composed of scleroderma medical experts from around the world who help determine which research proposals will be funded each year by reading, critiquing and ranking all applications.
An important part of our mission is to promote awareness and education of scleroderma to the medical community. Over the years we have developed a relationship with doctors in Colorado who are experts in treating scleroderma. This relationship has evolved into a formal Medical Advisory Board consisting of medical professionals with expertise in scleroderma who present at support groups and the Patient Education Day, serve as advisors for patient referrals and research and treatment updates, and assist the Chapter with scheduling educational programs with medical students, residents and interns to teach up and coming medical professionals to recognize the symptoms of scleroderma. The National Scleroderma Foundation recognizes UCHealth-Anschutz Campus, National Jewish Health and Children's Hospital Colorado, Section of Pediatric Rheumatology as Designated Research and Treatment Centers for their expertise in treating patients as well as their research programs.
The Chapter also works hard to spread awareness of scleroderma to the general public to help remove the stigma associated with a rare disease that no one has heard of. We attend community events to share information about the disease. We accept invitations to speak about the disease to many businesses, civic and other charitable organizations. We meet with federal, state and local legislators to promote awareness and educate them of the important need for continued funding of research for scleroderma, related autoimmune diseases and fibrotic diseases.
Organization name
National Scleroderma Foundation - Rocky Mountain
2002
Category
Health Care
Address
5403 E. Evans Ave.Headquarters
National Scleroderma Foundation 300 Rosewood Drive, Suite 105Denver County, CO, US
MA, US