Yesterday, I met a larger than life HSCT advocate, Jay T. Blakenfeld. If you don’t know who he is, please visit: https://hsct.blog
Please read it and share it.
Jay invited me up to run with his local running group yesterday morning and then chat about HSCT for a documentary he is compiling. His running group, Florida Track Club, FTC, was scheduled to run a popular loop in the Micanopy, FL area which is about 4 hours north. Don and I both had long runs scheduled for the weekend so we looked forward to some different scenery. The terrain is much different than south Florida in that there are hills and a lot of them! I now know what the slogan “I eat hills for breakfast” means! Combine the hills with a sandy and rocky terrain and we were completely out of our element.
Jay is one of the most welcoming people I’ve had the pleasure of meeting. He took my morning flubs with stride. A last minute late start, getting lost on the course and working with our limitations he was encouraging, patient and full of passion for his mission.
Jay is an advocate in the truest form. His knowledge of HSCT is astounding. He fought for his wife to have the treatment immediately after diagnosis. She had her transplant done in Mexico on March 18, 2018. I don’t think the words “can’t” or “no” exist in Jay’s world. Obstacles aren’t obstacles, only challenges that needs to be overcome. And overcome and educate himself is exactly what he did and is doing for the MS community.
Following our sit down, Don and I departed but returned later for a surprise party to celebrate Amy’s one year stem cell birthday. And from what I gathered in speaking with his friends, in true Jay spirit, he doesn’t do anything small. Jay had a mariachi band and a taco truck for the guests to celebrate Amy and spread awareness.
Today Jay is traveling halfway around the world to capture video on the HSCT procedure in Moscow from Dr. Fedorenko. I think that alone explains the level of commitment and advocacy Jay possesses.
Jay has an open challenge to the National MS society and I would love to see a public meeting occur. The National MS Society states they’d like to stop MS in its tracks. They accept millions ($181,247,871.00 in 2017) in contributions and donations annually but refuse to educate the vulnerable MS patients that look to them for the latest and greatest treatment options that HSCT exists and does exactly that.
Jay, we encourage you to be our Cousin Eddie, don’t stop. Keep up the amazing advocacy. Thank you for your time, hospitality and kindness. Thank you for the hills for breakfast and tacos for dinner. Safe travels. Xo
Viva HSCT Mexico!