ALS and the Ice-Bucket Challenge – Update

The ALS Ice-Bucket Challenge has been the buzz for the last few weeks on social media, in the news and in print. We’ve had many people reach out to us and ask questions regarding the ethics of contributing to an organization that does human embryonic stem cell research. It has been a busy few weeks for us! We all desire to support finding a cure for Amyotrophic Lateral Sclerosis (ALS), which is a fatal, progressive neurological disease that affects over 30,000 Americans at any one time. Many of our subscribers have expressed concerns about the charity sponsoring the “ice-bucket” challenge, the ALS Association, and whether donors are contributing to an organization that supports embryonic stem cell research.

A spokeswoman from ALSA wrote the following:

“The ALS Association primarily funds adult stem cell research. Currently, The Association is funding one study using embryonic stem cells (ESC), and the stem cell line was established many years ago under ethical guidelines set by the National Institute of Neurological Disorders and Stroke (NINDS); this research is funded by one specific donor, who is committed to this area of research. In fact, donors may stipulate that their funds not be invested in this study or any stem cell project. Under very strict guidelines, The Association may fund embryonic stem cell research in the future.”

There are alternatives to funding ALS research other than to the ALS Foundation:

The Midwest Stem Cell Therapy Center (MSCTC) at the University of Kansas Medical Center is starting an increasing number of clinical trials and educational efforts.

At the Mayo Clinic, Dr. Anthony Windebank and his team have one ongoing clinical trial for ALS patients and are ready to initiate a second clinical trial for ALS patients.

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.

ALS in the Heartland supports ALS patients in Nebraska and the surrounding states. These patients have the opportunity to enroll in ALS clinical research trials. Bryan LGH Medical Center’s College of Health Sciences is currently screening and accepting patients in two clinical trials – dexpramipexole and ceftriaxone. Both of these trials are in Phase III, which is where the therapeutic effect of the patient is specifically sought, once Phase I and II trials show safety and yield the optimal dose. This is the stage of testing that enrolls enough patients to allow a statistical verdict that a treatment is effective. If ALS patients or their families are interested in receiving more information about these exciting opportunities, please contact Becky Weber, Research Coordinator at Bryan LGH, at 402.481.8001 or Kathie Allstot, lead nurse for neurologist Dr. Gary Pattee, at 402.483.7226.

The State of Nebraska continues to allow destructive embryonic research at UNMC, despite little success world-wide from creating and destroying embryos. In vivid contrast, scientists and physicians have been able to help patients suffering from 73 different diseases and injuries using adult stem cells and umbilical cord blood stem cells. You and I agree that research undermines human dignity when it offers therapy to save some patients by destroying other human beings at their embryonic stage. Please consider sending your “ice-bucket” challenge donation to NCER in order to advocate for the cessation of the destruction of embryos in research, and to educate the citizens of Nebraska.

If you have any other questions, please do not hesitate to contact us at NCER.




Leave a Reply

Your email address will not be published. Required fields are marked *