Hello Very Best Donors!
This is the time of year when I un-apologetically ask you for donations to my bike ride. I thank you for listening, donating, supporting, cheering. Y’all are awesome.
This is our tenth year riding. I am amazed by what this team has accomplished. They have changed how we diagnose and treat mitochondrial disease in the Rocky Mountain area. I not only ask this group to ride 150 miles up three mountain passes, I ask that they raise over $500. Here is my letter to my team about what they support and the very important work they do.
You can support them here:
Hello Very Best Team!
I hope you stayed dry and managed to find a break in the weather. The clouds made me extraordinarily lazy. I made soup.
A couple of you have asked what is new in the clinic. Since you are fundraising for the clinic, this is an great question and one that I hope I can answer in a couple paragraphs.
Those who have ridden with us know these facts:
- We are the only mitochondrial clinic serving the Rocky Mountain area. Our team has been the sole supporter of that clinic
- We were part of an international clinical trial. One of 33 sites worldwide. This is a phase three trial that should get FDA approval by the end of the year
- Our clinic sees both children and adults in the area
- We provide ubiquinol, a supplement not covered by insurance, free of charge to families being seen by Children’s
- We recently became part of the Mitochondrial network of care. There are 23 sites nationwide, only 8 west of the Mississippi
This is all because of this team and their fundraising efforts.
But here is what your amazing researchers are doing in the lab. Our team has been focused on diagnosing and finding potential therapies by working with skin cells.
Skin cells? Why skin cells?
Mitochondrial thrive in organs that are tough to get to; the brain, the heart, the liver, muscle. Many times a mito diagnosis had to be from a muscle or liver biopsy which is very evasive especially for our medically fragile population. These cells are finicky, hard to keep alive in a laboratory and are of limited supply. Skin cells however are everywhere! I think I just shed some right now! I know, ew but you get the picture and why we would want to work with a more user-friendly cell.
When a suspected mito patient comes to Children’s, a non-painful skin biopsy is taken and researched in our lab. Our researchers are now pros at creating an environment where the mitochondria in the skin cells are ‘stressed’; usually by monitoring oxygen intake. From that point, they can look at where in respiratory chain does the breakdown happen, which makes diagnosis faster.
What is even more promising; from that methodology, the team can try potential treatments to see how the mitochondria react. This research is getting international attention. Dr. VanHove found a series of genes that react and respond positively to amino acid therapy. You can access the article here. Please note the reference to our bike team at the end: https://eurekalert.org/pub_releases/2018-10/uoca-cas100318.php
I know this is a lot to put into a fundraising letter. I might just tell your donors that they are supporting international break through research…..and mean it….100%
I hope this helps! You are all making a difference.