Aug. 21, 2014
You've probably heard of it by now, the Ice Bucket Challenge. Those challenged are supposed either to dump an ice bucket of cold water over their head, or donate to ALS research. Most people do both, posting a video of their icy bath. It's a stunt, but has successfully raised awareness of ALS as well as donations for research. But people should consider where their donations go and how the money is used.
ALS (Amyotrophic Lateral Sclerosis, a.k.a. "Lou Gehrig's Disease") is a fatal, progressive neurological disease. It attacks the nerves that control voluntary muscles, so it is sometimes termed "motor neuron disease". As the nerves die, muscles weaken and atrophy, including the muscles for breathing; most people suffering from ALS die of respiratory failure. The cause is unknown and at this point there is no cure, and very little that can even slow disease progression.
So, raising awareness about ALS and increasing support for ALS research is a good thing. But whether you participate in a challenge or just donate to important research, where should your donation go?
So far, most of the attention and millions of dollars in donation have gone to the ALS Association. However, the ALSA has admitted that it gives some of its money to embryonic stem cell research and has no qualms about doing so in the future. (Note the ALSA page linked in the above has just recently been changed, and now notes that embryonic stem cell research "has raised ethical concerns.")
As Rebecca Taylor has pointed out, ALSA also has given money to an affiliate, NEALS, that has given money to a trial that uses stem cells derived from the spinal cord of an aborted fetus.
That trial is being run by the University of Michigan and Emory University, and sponsored by a company called Neuralstem which uses aborted fetus cells for research ("from the donated spinal cord tissue of an 8-week-old aborted fetus.") All of the Neuralstem trials use cells derived from abortion.
Project ALS, another charity for ALS research, also funds embryonic stem cell research.
But there are alternatives for donations that use only ethical stem cell sources!
Here are a few of my favorites.
The Midwest Stem Cell Therapy Center (MSCTC) at the University of Kansas Medical Center is only a year old, but is starting an increasing number of clinical trials and educational efforts.
One potential future trial would be using adult stem cells for ALS. Dr. Rick Barohn, an internationally recognized expert on ALS, recently joined the Advisory Board for the Center.
The MSCTC does not do any embryonic or aborted fetal stem cell research, ONLY ADULT and NON-EMBRYONIC STEM CELL RESEARCH and CLINICAL TRIALS.
HOW DO I DONATE? click the "Make a Gift" link in the left column of their web page, it specifies donation for the MSCTC.
(Disclosure: I am a member of the MSCTC advisory board)
Researchers at the Mayo Clinic are currently doing clinical trials for patients with ALS, using ADULT STEM CELLS.
HOW DO I DONATE? there is a "Give Now" link near the top of web page from Dr. Windebank's link above; people can specify that their donation go to his ALS research team.
NOTE that the second trial is in association with an Israeli company, Brainstorm Cell Therapeutics, that is developing the adult stem cell treatment for ALS and other neural conditions. While this is still an experimental trial, the early results using adult stem cells for ALS treatment have been positive.
The John Paul II Medical Research Institute in Iowa City is doing research in several areas including ALS, and does not support embryonic stem cell research.
HOW DO I DONATE? use the button for "Donate Now" on their main web page
(the following listing was updated Aug 22, 2014 to clarify the profile of this company)
The Adult Stem Cell Technology Center, LLC is a for-profit company developing new methods for growth and application of adult stem cells, and does not support embryonic stem cell research.
Click "Contact Information" in the right column of their web page and e-mail the Director to learn more about the company's adult stem cell technology development plans.
Donate to ethical adult stem cell research! Adult stem cells are helping patients now!