Friday, October 2, 2009

National Institutes of Health Research Grant

As someone who suffers from Spasmodic Dysphonia, I received the following e-mail today:

And now, for some really exciting news that could have a real effect on many of us with focal forms of dystonia such as Spasmodic Dysphonia. The NIH has awarded a 5 year, $5.6 million grant to help advance research and studies through a multicenter Dystonia Coalition!!! The Dystonia Medical Research Foundation will play a key role!! Read the complete information below:

NIH Awards New Grant to Develop Better Treatments for Focal Dystonias

September 30, 2009 – Officials at the National Institutes of Health (NIH) have announced the funding of a five year award aimed at forming a multicenter Dystonia Coalition to advance clinical research on primary focal dystonias, including Cervical Dystonia, Spasmodic Dysphonia, Blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, MD, PhD, Professor of Neurology and Human Genetics at Emory University in Atlanta, GA.

Dystonia is a neurological movement disorder that causes muscles to contract and spasm involuntarily. It affects men, women and children. Dystonia can be generalized, affecting many major muscle groups and resulting in twisting, repetitive movements and abnormal postures. Or dystonia can be more focal, affecting a specific part of the body such as legs, arms, hands, neck, face, mouth, or vocal cords. Currently, it is estimated that at least 300,000 individuals in North America suffer from dystonia, making it more common than Huntington’s disease, muscular dystrophy, and ALS. There is no known cure.

The $5.6 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments appropriate for monitoring disease severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, making these resources available to investigators worldwide. The Coalition will bring together the most committed dystonia researchers in North America and Europe, along with dystonia patient advocacy groups.

The Dystonia Medical Research Foundation (DMRF) will play an integral role by providing logistical and planning support for the Coalition. The Foundation is well-poised to serve in this capacity as it is the largest and most established patient support organization devoted to dystonia.

“Dystonias are rare and devastating diseases, with limited and sometimes inadequate treatment options,” explains Dr. Jinnah. “Funding of the Dystonia Coalition will allow us to address unmet needs in focal dystonia research, as well as make resources available to other investigators that will help to advance the field.”

“We are delighted about the funding of the Dystonia Coalition and pleased that Dr. Jinnah will be leading this effort,” says Mahlon R. DeLong, MD, Scientific Director of the DMRF. “This is a unique opportunity to provide much-needed attention to these rare diseases. The DMRF is proud to play a role in this important effort.”

The Dystonia Medical Research Foundation is dedicated to advancing research for more treatments and ultimately a cure, promoting awareness and education and supporting the needs and well being of affected individuals and families. To learn more about dystonia, contact the Dystonia Medical Research Foundation at 1-800-377-3978 or
I would love for new treatments and/or a cure to be found for my condition. Being told by my doctor last year that there was nothing more they could do for me was a real blow. You would think that the above would come as good news to me. Sadly, it is not.
The National Institutes of Health is the Nation's Medical Research Agency run through the U.S. Department of Health & Human Services. This money will be used for research using embryonic stem cells to which I am morally opposed. I was quite disgusted when I went to the NIH Guidelines on Human Stem Cell Research.
The guideline begins with this statement: On March 9, 2009, President Barack H. Obama issued Executive Order 13505: Removing Barriers to Responsible Scientific Research Involving Human Stem Cells.
This statement is misleading. I have previously written about the stem cell debate on this page. President Bush allowed government funded embryonic stem cell research through existing lines that had been slated for destruction. There has never been any sort of ban on any type of stem cell research, just government funding for embryonic stem cell research. The research already done, which is extensive, has revealed that embryonic stem cells are unstable and lead to cancer. Why they want to continue on in that vein... taking money from adult stem cell research that has held much more promise, is beyond me. Yes, I know that embryonic stem cells can be manipulated into any sort of tissue where adult stem cells are more limited. I just have a problem with the creation of life being cannibalized in the name of medicine and cures for diseases. It is wrong.
So what happens if they come up with a "cure" for Spasmodic Dysphonia through embryonic stem cells? I will choose to live with it.


jojo said...

very interesting, thanks for sharing it with us. I had no idea...

Roland Hulme said...

I assume you mean live with the disease, not live with the cure.

There was an old legend of the vampire countess who stayed young by bathing in the blood of slaughtered virgins. In some grisly respects, modern science has actually made that horror story come true.

Two Dogs often used to call embryonic stem cells 'cancer bombs' or something. As usual, he might have been onto something (not that I noticed it at the time.)