Help ALS Patients Move Again with CI Therapy
Organized by: Syau-fu Ma
Syau-fu Ma via Crowdrise
January 22, 2015
Event Name: Christmas Challenge
IS IT POSSIBLE TO REGAIN MOVEMENT IN LIMBS RENDERED USELESS BY AMYOTROPHIC LATERAL SCLEROSIS (ALS)?
Last year Rich, age 44, was hiking in the Arizona Sonoran Desert with his wife and three children. Happy, active, fit. This year, he struggles even with the assistance of a cane just walking the short distance from his car to the front door of his office. Next year he will likely be in a wheel chair. Five months ago Rich was broadsided with the diagnosis of amyotrophic lateral sclerosis (ALS). His is the story of approximately 30,000 Americans. ALS is a devastating, rapidly progressive fatal disease that robs its victims of the use of their muscles by destroying the nerves that control them. In 95% of the cases there is no known cause, and in 100% no known treatment.
While the search for a cause and a cure continues, another dimension in the treatment of ALS has been largely ignored, that of restoring function to muscles paralyzed by ALS. Imagine the impact this would have on the quality of life of those affected by ALS. If you can give back movement in a leg, you give back mobility and autonomy. If you can give back movement in a hand or arm, you give back the ability to control a joystick on a wheelchair, or the ability to use a computer. If you give back use of the diaphragm, you give back the ability to breathe without a ventilator. With an average life expectancy of 2-5 years, prolonging autonomy, even if for just 3 months, 6 months, 1 year, would have a tremendous impact on the quality of life for an ALS patient.
Constraint Induced Movement Therapy (CI Therapy), using principles of neuroplasticity, may just be that cutting edge therapy to help ALS patients regain lost function of their muscles; giving hope to people such as Rich of prolonging the time he has to drive his son to swimming, walk his daughter to school, or work in the garden…things that we take for granted.
Because ALS is such a rapidly progressive disease, without the prospect of slowing or preventing disease progression, any thought of temporarily re-establishing use of paralyzed limbs is fleeting at best. Not unexpectedly, there is very little out there that addresses this issue for ALS patients. For other causes of hemiparesis (weakness or paralysis on one side of the body) CI Therapy, developed by Dr. Edward Taub at the University of Alabama Birmingham (UAB), integrates neuroscience with behavioral science to rewire the brain, enabling patients to regain movement in their affected limbs. Neuroplasticity is an emerging concept that debunks the old dictum that specific areas of the brain control specific functions, and that we are born with a fixed number of neurons. Through repetitive tasks increased in small increments, CI Therapy is able to quickly rewire the neuronal connections, as evidenced by increases in gray matter within the brain. The bulk of the clinical research has been done on hemiparesis resulting from acute events, such as chronic stroke, cerebral palsy, traumatic brain injury (current clinical trial being funded by the US Department of Defense for War Veterans) and spinal cord injury, with breathtaking results. Recently, supported by grants from the Multiple Sclerosis Society, hemiparesis from the progressive disease multiple sclerosis has also been shown to have a positive response to CI Therapy. This gives promise to the efficacy with ALS.
Unfortunately, CI Therapy is not currently available to ALS patients. The Taub Clinic has a strict policy of only accepting patients with hemiparesis due to causes that have clinical research data supporting the efficacy of CI Therapy. The good news is that this speaks strongly to the integrity of the clinic. The bad news is that, as they have not studied CI Therapy in ALS patients, this treatment modality is not currently available to ALS patients.
However, after continued dialogue with Dr. Taub, bolstered by his clinic’s recent success with multiple sclerosis patients, he has agreed to run a pilot study for CI Therapy for ALS patients. If we are able to raise the necessary funds, they will accept Rich as the pilot case study. If they achieve positive results, he is committed to writing a grant for a larger clinical trial for CI Therapy and ALS.
The door has been opened for a treatment for ALS patients that has the potential of significantly impacting the quality of their lives! UNTIL a treatment is found to slow or halt the progression of ALS, CI Therapy offers the possibility of extending the autonomy of ALS patients. WHEN a treatment is found to slow or halt the progression of ALS, CI Therapy offers the possibility of reversing the damage inflicted by ALS. Please join us as we offer a ray of hope for those battling this relentless disease, and cross into a new frontier of treatment for ALS.
Time is of the essence for ALS patients, as the seconds tick away, their neurons continue to die, taking away their ability to move. The faster we can raise the funds to enroll Rich in the pilot study, the sooner we can move forward to offering CI Therapy to ALS patients.
During this season of giving, please take a moment to reflect upon all we have to be grateful for. Please stop to reflect on the simple things such as walking or carrying your daughter to bed at night, and understand that these are things that ALS patients are robbed of by this devastating disease. Help us give them this back.