Why I ride
I am riding again in the Courage Classic for Team Summits for Samantha. Our captain, Heather Schichtel, founded the team as a way to give back to Children's Hospital for the care her daughter received in her time of being with us on this earth. We were just a handful of friends and raised $3,000. We have grown to ~60 riders and raise $100,000+ each year earmarking our money raised to go to all things Mitochondria related!
I am tied to this team because Heather is a dear friend of mine dating back to our college days at CU. Heather has turned her loss of her two children to Mitochondrial Disease into something beautiful and purposeful that impacts others on a daily basis. She continues to volunteer at Children's, writes her own blog, and started and manages the non-profit foundation Miracles For Mito. All of her efforts are with the goal of helping others that are suffering as a result of Mitochondrial Disease. I am very proud of her courage and continued outreach and am honored to ride on her team. I wouldn't dream of missing this annual event. Her daughter Samantha is in the picture above.
The large amount of money our team raises each summer as a result of YOUR donations allows us to earmark where at Children's the money is put to use.
Funds raised by the Summits for Samantha team support the following mitochondrial care and research network here in Colorado.
Mitochondrial Clinic at Children’s Hospital Colorado • The Mitochondrial Clinic at CHCO is designated a Mitochondrial Care Network, one of eighteen centers in North America recognized for excellence in providing multidisciplinary care for patients with mitochondrial disease (www.mitonetwork.org/centers). • The clinic participates in an ongoing clinical trial to evaluate the safety and efficacy of Elamipretide in patients with primary mitochondrial myopathy. • The clinic at CHCO follows approximately 60-80 families providing care for about 120 patients with mitochondrial disease including both children and adults • The clinic sees patients once a week and this clinic is designated specifically for patients with mitochondrial disease and for patients with suspected mitochondrial disease. • The clinic serves families in the Rocky Mountain region including Colorado, Wyoming, New Mexico, and Montana.
Mitochondrial Diagnostic Laboratory at Children’s Hospital Colorado • The Mitochondrial Diagnostic Laboratory was established at the University of Colorado Anschutz Medical Campus in October 2009 and was relocated to Children’s Hospital Colorado in March 2014. It resides in the Department of Pathology and Laboratory Medicine. • Samples for analysis are received from clients from the United States and Canada. • In 2018, we performed approximately 120 tests. One assay we offer is called the BNPage with in-gel activity staining which is only offered in this laboratory in North America. • In combination, the mitochondrial diagnostic and research laboratories have provided comprehensive analyses for over 300 patients with suspected mitochondrial disease.
Mitochondrial Research Laboratory at University of Colorado Anschutz Medical Campus Goal: The characterization of primary mitochondrial disorders with the goal of translating this research into the development of therapeutics for these complex disorders • Direct relationship exists between the clinical and research mitochondrial laboratories that results in development of new assays that translate from the research laboratory at the university to the clinical laboratory at CHCO. Better and more sensitive tests improve the diagnostic capacity and treatment of patients with mitochondrial disease. • We have one ongoing NIH funded grant currently which examines whether treatment of cells from patients with certain types of mitochondrial diseases with natural supplements such amino acids will improve the function of the mitochondria. The Mitochondria Clinic, the Mitochondrial Diagnostic Laboratory, and the Mitochondrial Research Laboratory work in synergy to provide the best care and functional diagnosis while looking towards the development of possible new treatments for mitochondria disease.
We are so proud to see what these funds have meant in terms of supporting the amazing research team/clinic here in Colorado. Here is an outline of our support:
• 2013: Funds from the ride purchased an Oxygraph for the lab which has been instrumental in their research on Fibroblasts.
• 2014: We funded resources to collect data necessary to join the North American Mitochondrial Disease Consortium (NAMDC). o The current medical fellow at Colorado was funded through NAMDC. He has been an amazing asset to our team.
• 2016: We helped fund a research project looking at the link between mitochondrial deviations and type one diabetes.
• 2017: In March, researchers developed a protocol approved by the IRB to study mitochondrial disorders specifically in Colorado. In order to fund this IRB, our bike team agreed to fund the clinic indefinitely.
• 2018: We became a site for the MMPOWER drug clinical trial. Colorado was recognized as part of the Mitochondrial Network of Care and research from the mito clinic was featured in Nature Communications: https://www.nature.com/articles/s41467-018-06250-w Research is critical in the fight against mitochondrial disease. As genetic testing evolves, more adults are being diagnosed with a mitochondrial deviation. Mitochondrial dysfunction has already been linked to Alzheimer’s, Autism, and MS.
This disease is progressive and can be fatal. There is no cure. In order to grow our research and support of the mito community, we hope to raise even more money through the Summits for Samantha team during this year’s Courage Classic.
I hope you feel moved to donate. All these accomplishments wouldn't have been possible without your past donations. Please consider donating again this year. No amount is too small. It all adds up to something wonderful! My goal this year is to raise $1000. I humbly ask you to consider donating to this noble cause that helps so many!