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ALS Registry

September 2012

Inside this Month's Exchange eNewsletter . . .

Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

How to Avoid the Risks of Dehydration

Dr Kasarskis

Dr. Kasarskis

Q:  Given the excitement and promise being shown in stem cell research today, can you explain or summarize the current known types of stem cells that have been explored with ALS patients?
Tina Hayes, daughter of Clarence Southard, Anchorage, Alaska

A: You ask an excellent and timely question. While there is indeed great potential in harnessing stem cells to solve problems in people with ALS, there is much work to be done before direct benefits will be possible. As people frequently say these days, “it’s complicated.” 

For example, let me tell you a little bit about the only ALS trial so far in which neural stem cells are injected right into a patient’s spinal cord. It’s being overseen by the University of Michigan but based at Emory University, in Atlanta, and 15 patients to date have undergone the procedure while the FDA monitors its safety.  Only one of the patients so far has shown improvement.

The clinical trial involves injecting between half a million and a million stem cells directly into the spine. Scientists think these cells may act to repair damaged nerve cells, hopefully stopping disease progression.

Inserting the stem cells is a delicate process. The spinal cord is a very perilous piece of real estate. Every step of the way is critical. The neurosurgeons in this project are skillful beyond belief.

Here’s what’s involved in this trial. The person with ALS goes to surgery, where physicians slice through skin and muscle, remove part of the lower-back (lumbar) spinal bone, and reveal a pulsing, white spinal cord about the width of a man’s index finger.  That area is often used with people who are already losing strength in their legs; there’s less risk of losing capability. If that procedure is shown to be safe, at another time, physicians move the procedure up the spine, a place where they believe treatment may be most promising. But the risks in the upper spinal cord are greater because that area controls breathing, arm movements and leg movements.  The cervical spinal cord is a very busy place.

The stem cells come from a biomedical firm called Neuralstem, and they are taken from the spine of a fetus that was aborted in 2000, and then cultured and recultured once again. Then they’re frozen until they’re used. After the cells are checked to make sure a large enough percentage are viable (still alive), they are injected into the substance of the spinal cord itself. To date, the clinical trial has cost about $2.5 million.

Still to come with this trial are months of data analysis. Then there are the decisions about whether the right kinds of stem cells have been chosen, how many should be injected, and where. There are so many practical questions to answer at every turn about whether the body may reject the stem cells as foreign bodies, as they often due with organ transplants.  Do ALS patients receiving stem cells require immunosuppression, and if so, what drugs, what dose, and for how long?  Could stem cells, with their propensity to propagate, turn malignant, as cancer cells do when then spread? And how will progress and effectiveness be measured?

In truth, it will most likely be decades before stem cell technology translates into routine treatment. But the research must continue.  Breakthroughs could come from unexpected places but I hope that these comments put this important line of research into perspective.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.

If you would like to submit questions for a future Q & A, please send your questions to  Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. 


isolationHow to Prevent Feeling Isolated

Dealing with ALS can gradually make some people feel like they’re living in a walled compound.

Facing challenges in dealing with activities of daily living, getting places, accomplishing chores and dealing with responsibilities – even just communicating -- can be difficult.

Sadness, frustration and moodiness can add to the feeling of isolation that sometimes occurs. Social isolation is common among those with serious chronic diseases, especially when physical limitations make socializing harder.

But people with ALS who’ve dealt with these problems and experts who specialize in helping people with the disease offer suggestions about how to avoid feeling isolated:

  • Use email and the Internet to connect with others, far and wide. Chat rooms, Facebook, Twitter and other tools can offer a great way to stay in touch with friends and even meet new people.
  • Stay involved in something you love, even if in a different way. While you may have to modify how you participate in an activity, finding a connection to what you have always enjoyed can still be fun. Join a group that goes to movies or the theater, check out a book club or visit a museum.
  • Reach out to people directly. Often others are unsure of what you’d like in the way of contact or don’t know how to approach you, especially if you have communication or mobility challenges. Tell them, “It would be great just to see you,” or ask, “Would you like to go for a walk around the block?”
  • Don’t blame yourself for your feelings. They’re natural. You’re up against a great deal of stress and many new challenges.
  • Stay up-to-date on the news, trends, new movies and books. It will help you connect with others.
  • Tell your friends what kinds of activities you would enjoy. They may be hesitant to suggest something, not knowing if their idea would be feasible or enjoyable for you. If you let them know what you’re up for, they’re likely to want to be with you.
by Barbara Bronson Gray, RN, MN


In the News: Alcohol May Reduce Risk of ALS

Research published recently in the American Journal of Epidemiology suggests that drinking alcohol may reduce the risk of ALS.                                                                                                                                                           Alcohol Exchange Sept 2012

The study, which also affirmed that smoking may increase the risk of ALS, was a population-based analysis including almost 500 people with ALS.

The risk among drinkers was about half that of non-drinkers. The research did not, however, prove a cause-and-effect relationship.

Reviewers from the International Scientific Forum on Alcohol Research, at Boston University, cautioned that the research should not be used to prompt people to consume alcohol in an effort to prevent ALS.

To learn more about the research, see


Participate in these Educational Web Calls

Don’t Miss This August Call

Targeting of monomer/misfolded SOD1 to treat ALS
Hosted and organized by The ALS Association’s Research Department
September 17, Monday, 1 p.m. PDT (4 p.m. EDT)
Janice Robertson PhD, University of Toronto                   

Call-in toll-free number (US/Canada): 1-877-668-4490
Meeting Number: 825 265 417
Meeting Password: Chicago1

Communication Options for Those Living With ALS
Monday, September 24, 2012, 11 a.m. PDT, 2 p.m. EDT
Alisa Brownlee, ATP, The ALS Association, Greater Philadelphia Chapter

Call-in toll-free number (US/Canada):1-877-668-4490
Session number: 824 192 946
Session password: Attopiccall1

You should know:

You can read summaries of research calls you’ve missed by going to:  


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