Kazakhstan - The Stem Cell Journey

Hello family and friends (and possibly anonymous followers…),

It has been quite some time since my last update, and while a lot of positive things have happened in my life, I think what I’m doing now deserves the most space in this post.

I am writing from Astana, Kazakhstan, where I have received two stem cell treatments through a pilot program called Breakthrough to Independence, organized and funded by the World Stem Cell Foundation (www.worldscf.org). Basically, the program involves receiving a stem cell transplant and then devoting 18 months to intensive physical therapy and other alternative therapies to see what kind of recovery might be possible. I am going to share the story of how I got the awesome opportunity to participate in this project, and detail my journey and the experiences I’ve had here in Astana. To keep the posts from getting too long and boring, I’m going to split them up as I tell the story. I am also going to link to appropriate pages for medical information, since even though I think I have a good grasp on the procedures and the science behind them, I don’t want to misrepresent any of the organizations involved. The main partners in this project have been the World Stem Cell Foundation, Stemedica Cell Technologies, and the National Research Medical Center, Kazakhstan (hopefully your browser has a translator for that one...).

Part One: How it started

I was approached by Laura and Angela at Awakenings in August about being involved in a stem cell study. They explained that there was a possibility that I could receive stem cells, and then have the chance to receive therapy at Awakenings for 18 months, all at no cost to me. Angela worked with a doctor at one time who is now part of a company called Stemedica Cell Technologies, and they approached Awakenings looking for two paraplegics who might be good candidates for this program. They were looking for people who were young, healthy, and fit, and whose injuries were at most only a few years old. They were also hoping for participants who would be willing to talk about their experience and be spokespeople for the project. When Angela and Laura presented this to me and asked if I wanted to participate, I jumped at the chance. I was getting ready to leave to go to Florida for a reunion with my friends, but I spoke briefly on the phone with the rehab doctor at Stemedica, Dr. Manny Soto, and set up a meeting for the week after I returned.

When I came back from Florida, I went to the Stemedica offices in San Diego for my meeting. I first met with Kaye Hentschke, the fundraising coordinator for the project at the World Stem Cell Foundation, and Dave McGuigan, a member of the board of the World Stem Cell Foundation and the VP of Marketing and Business Development at Stemedica. They told me about Stemedica’s history, which instantly showed me how dedicated the company is to developing technology that can treat people with conditions like mine. The company was started by a family of doctors who were interested in finding alternative treatment for their sister in law, who had experienced a spinal cord injury that left her quadriplegic (you can read more about the company’s history here). I was able to meet the other doctors and executives who are part of Stemedica – Dr. David Howe, Dr. Maynard Howe, Dr. Manny Soto, and Dr. Roger Howe (read their bios here). I was impressed and touched by their passion to help people and their faith in the potential stem cells have to change people’s lives.

I also learned a lot about the stem cell technology at Stemedica (and about stem cells in general) – the type of cells they use, where they come from, and how they can be used effectively to treat people with not only SCI, but many other types of medical conditions. I was amazed at the success there has been treating people with strokes, eye disease, Alzheimer’s, and dementia with stem cells. The testimonials and before and after videos in the presentation pretty much spoke for themselves.

They explained what the treatment would entail – receiving two different kinds of stem cells through two different methods. Both types (and the only cells produced by Stemedica) are adult allogeneic stem cells, meaning that they come from a donor and not from your own body, and that they do not come from embryos but from adult cells. The first type of cell, the neural cells, would be injected directly into the spinal cord through a lumbar puncture (basically a spinal tap). The procedure is minimally invasive and has very few side effects or risks. The second type of cell is called a mesynchemal cell, and is administered via an IV drip for about an hour. I also learned that the stem cells we would receive are immune privileged, so there is no need for immunosuppresnat drugs because the body’s immune system won’t reject the cells. The doctors and researchers at Stemedica believe that these adult stem cells are the most effective safe cells that currently be given to patients, and they have had almost no adverse effects with any patients who have received them. I strongly encourage you to visit Stemedica’s website to learn more about the origins of the cells and what they do – it is extremely informative and will explain this all in a way that I am definitely not qualified to do! Adult Stem Cells - Stemedica.

I learned what the program would require of me, in addition to the benefits I would receive. I would be expected to undergo preliminary tests to be sure I was fit to participate, and to establish a baseline by which to measure future progress. After receiving the cells, I would be expected to devote a considerable amount of my life for the next year and a half to my recovery, and work as hard as possible to improve my condition as much as possible. I would also receive another stem cell transplant in those 18 months, when the doctors decided it made the most sense. I would also be expected to share my experience – whether at speaking engagements or in other forms of media as needed. The goal of this pilot project is to raise awareness about how safe and effective adult stem cells are at treating spinal cord injury (and other conditions), so that money can be raised to provide the same opportunities to others who are newly injured and hopefully greatly increase their prognosis after injury.

Stemedica has received FDA approval to use their cells in a clinical trial in the United States for ischemic stroke patients, but at the moment that is the only treatment possible using the cells in the US. I was told there were three possibilities of locations for treatment: Kazakhstan, Mexico, or Russia. Many treatments have already taken place in Russia (most people treated with Stemedica cells have received their treatment in Russia).

After this exhaustive meeting, I was excited to move to the next step. This sounded like a great opportunity for me to receive stem cells that I otherwise would probably never get, thanks to the prohibitively high cost and lack of clinical trials in the US. It would also give me the chance (and the funds) to do what I moved to San Diego to do in the first place (in part) – work on my physical rehabilitation as much as possible. Sounded like a win-win situation for me, and I would be paving the way for others to get treatment and hopefully not endure what I have as a spinal cord injury patient. I talked it over with my family and we all agreed that as long as we could make the logistics work, I was going to do everything I could to participate.

[to be continued...]