Update Re: Bogota and stem cell / gene therapy

After speaking to Dr. Williams in more detail, it is with great disappointment Kevin faced the realization going to Bogota, Colombia is no longer an option at this time. Despite Dr. Williams’ news release, website and staff, his therapy does not currently offer the gene therapy/stem cell combination. In addition, Dr. Williams expressed his concern that other ALS patients have had difficulties with their lower lung capacity and the Bogota high altitude. As you know, Kevin struggles already with low lung capacity. The altitude was a consideration from the start, but with a chance at a one time treatment that would provide a lifetime of benefit, the benefit outweighed the risk and the plan was that Kevin would be on oxygen the entire trip. However, hearing that some ALS patients struggled, and one ALS patient ended up on a ventilator in a Bogota hospital, it was necessary to choose another option.

Because the stem cell treatment that Dr. Williams is currently able to do (without the gene therapy portion) is also available here in the US with a greater reduction in health risk and for less money, the following plan to stabilize Kevin’s symptoms has been devised: November 6th and 7th, 2013, Kevin will receive stem cell treatment at The Stem Cell Rejuvenation Center in Phoenix, Arizona. While it is not the one time state-of-the-art treatment he was hoping for, stem cell treatment is still state-of-the-art and does provide hope for increased strength and a plateau in his degenerative symptoms. Once again we are reminded of the ups and downs to dealing with a terminal illness, and we are thankful for this second option.

The Stem Cell Rejuvenation Center opened in 2002. They have provided treatment to many ALS patients for the past four years. For more information about them please visit the-stem-cell-center.com.

This procedure, which is not covered by insurance, cost $7600. It is a procedure that will need to be done yearly, or until the current phase I and phase II ALS stem cell trials (or something better) are mainstream and paid for by insurance. Without the current donations received, Kevin would be unable to do this treatment. Because of donations Kevin was able to apply and be accepted for treatment in Arizona immediately. Donations made that possible. Thank you!
This journey would be impossible without your continued love and support! Because Kevin has an ongoing need for financial assistance, the fundraising portion of KevinsCrusade.com and Kevin’s YouCaring site will continue.

With a large amount of enthusiasm, Leslie and Kevin, along with a helper, will depart Minnesota around November first driving their handicapped van to Arizona. Look for pictures and updates soon!