Meet Jamie Pendleton | Biotech Rep/Mother of child with rare disease – raising money to develop a cure

We had the good fortune of connecting with Jamie Pendleton and we’ve shared our conversation below.

Hi Jamie, what is the most important factor behind your success?
There is a child behind my need to succeed. I have worked in the biotech industry for 15 years, putting patients first. I have always been pro pharmaceutical industry, but I didn’t realize just how this system fails, until my daughter, Miren, was diagnosed with an ultra rare genetic disease, for which there is no cure. With fewer than 100 patients diagnosed with CACNA1A, there is no incentive for pharmaceutical companies to develop a treatment. Therefore, I am raising capital to develop one myself, with the goal of treating Miren and helping other kids with CACNA1A reach their highest potential.  Through this, I have learned that rare diseases aren’t that rare. More than 7,000 rare diseases have been identified, and 10% of the population will be diagnosed with a rare disease. More and more parents are starting to drive research and development of drugs for these conditions through personal initiatives. As a rare disease advocate, I hope to eventually change this and figure out a way for pharmaceutical companies to lessen this burden for families that include children with rare disease diagnoses.

Alright, so let’s move onto what keeps you busy professionally?
My mom died of colon cancer when she was 42. I was 10. At that time, I thought I wanted to be a doctor. Organic chemistry made me realize that that wasn’t my path.  I became a pharmaceutical sales rep, and over a 10 year period, worked my way up from primary care representative to oncology rep selling drugs that help patients with cancer. This wasn’t an easy path. The only way I succeeded was to outwork my teammates and set myself apart. I was a competitive marathon runner and I approached my career in the same way. You only get to the finish line after putting in the work, day in and day out. You learn to embrace moments of suffering and push through. Like Winston Churchill said, “when you are going through hell, keep going.” When you think you can’t work harder or push harder, you are wrong. There is always something left. Find your why and you will figure out the how!


Let’s say your best friend was visiting the area and you wanted to show them the best time ever. Where would you take them? Give us a little itinerary – say it was a week long trip, where would you eat, drink, visit, hang out, etc.
I live in Golden at the base of south Table Mesa, so we would do a quick trail run and then if it was nice outside, hit happy hour at Golden Moon Speak Easy. Their cocktails are amazing, and I’ve been told they make the only Absinthe that is allowed to be imported into Europe. If it’s summertime, I would take my friend to Crested Butte and insist on Mountain Biking the 401, my all-time favorite trail. I’m not high class, but Aspen is another one of my favorite Colorado towns. I would get a hotel at the Limelight, the rooms with decks are awesome during the summer (I always get a wine and cheese plate delivered at happy hour) Also, wonderful after skiing. Aspen Highlands is one of the prettiest mountains I have skied.  I would probably bring that friend back into town and head up to Boulder, my favorite place for trail running. I would book a reservation at Corrida (my mom’s family is Spanish Basque-and so is this restaurant!) Corrida, has the best view in town.  Black Belly is another go-to, and has my all-time favorite hamburger! Hanging out, getting some exercise, and enjoying happy hours are the best way to experience Colorado!

Shoutout is all about shouting out others who you feel deserve additional recognition and exposure. Who would you like to shoutout?
My shoutout is dedicated to badassed rare disease moms including: Julia Vitarello – who was the first mom to raise $4million and fast tracked a treatment for her daughter’s Batten Disease Mutation. Amber Freed – master networker, and Co-founder of SLC6A1 Connect, and Kasey Woleben – who started Rare Village to provide parents with a road map on how to raise capital and rally researchers.  Without these women, I wouldn’t have known that there was a potential to cure my child or HOW to do it! I’m in sales and I’ve often said that my super power is networking. I have had to use every ounce of this unique and special talent in order to meet women like Julia, Amber, and Kasey. Without them, I would not be able to move forward. Together, they may literally change the course of my daughter’s life!

Website: Https://give.rarevillage.org/campaign/mirens-marathon/c307965

Instagram: Jamiethomaspendleton

Linkedin: Jamie (Thomas) Pendleton

Facebook: Jamie Thomas Pendleton