Trial treatments for john

In January 2014, my brother, John Warneke, began to notice that something was wrong with his right hand.  He quickly made an appointment with his doctor and was sent to O’ahu for a brain MRI.  Everything looked good but the symptoms remained.  Over the next few months and after extensive testing through blood work and EMG’s, there was only one thing left; a diagnosis of Amyotrophic Lateral Sclerosis (ALS), a progressive neural degenerative disease that eventually paralyses the body of all function ending respiratory failure and death in 2-5 years.

In March 2015, his voice started declining and as he began to slur his words as well as limping on the right side due to weakness.  While there has been much progress in the area of ALS research, the FDA has outright stated there they will not exercise Accelerated Approval for any ALS treatments that was put in place in the early 90’s during the AIDS crisis for promising and potential life saving treatments such as Genervon’s GM604. Instead, they rest on their laurels and are content to let people die.

Here is a recent press release from Genervon:

http://www.genervon.com/genervon/PR20150922.php

Trial Science/Data:

http://www.genervon.com/genervon/PR20150922.php

 To make matters worse, he found out in September 2015 that he also has Borreliosis, commonly known as Lyme disease.  Now he is faced with treatment for the Borrelia infection as well as ALS.  The average cost for care for an advanced ALS patient can run as high as $6000 per month and Lyme disease can run as much as $70,000 to $100,000 to get cleared up when chronic as it is in his case.  Lyme disease expenses run high due to IDSA guidelines for treatment that favor the insurance industry so they don’t have to pay.

In August 2015, John heard of a study conducted in Tijuana, Mexico where two high profile athletes were treated for their strokes and made full recoveries.  Gordie Howe of the Red Wings and John Brodie of the 49ers were the athletes that were treated at NovaStem with the stem cells coming from Stemedica in San Diego (See story below).  The trial was FDA approved so my brother researched the company and found that they would conducting another trial for ALS but the exception was that this trial would be patient funded at a cost of $32,000.

 http://www.usatoday.com/story/sports/2015/05/18/fetal-stem-cells-gordie-howe-john-brodie-tijuana-stroke-stemedica/27501717/

My brother is a CSU Sacramento, Magna Cum Laude with a degree in Physical Therapy.  He has worked hard to achieve his goals and continues to work even though he knows that he should stop.  He has fallen five times and has fractured his ribs on one occasion and broken his collar bone on another.  He has to sit down to get dressed, coughs frequently while eating due to swallowing problems and has to take medications with ice cream or mash potatoes to make sure it goes down the right way.  He needs this treatment desperately yet he continues to work when most would have given up.

My goal for him is raise sufficient funds for treatment for both the stem cell study and the Lyme disease to ease the emotional and financial stress that both these conditions pose and to keep his dream alive of giving to the community he has served as a physical therapist for the past seven and a half years.