From (L-R ) Belal Majed, Jehad Majed, and Wissam Majed, who suffers with ALS.

DEARBORN HEIGHTS — Local resident Jehad Majed is looking to raise awareness about Amyotrophic Lateral Sclerosis (ALS), a disease that has severely impacted his brother, who was told by doctors he only has two to five years to live. 

ALS is a progressive disease that affects nerve cells in the brain and the spinal cord and slowly kills motor neuron cells over time. The progressive degeneration of the motor neurons in ALS eventually leads to stiff muscles, muscle twitching and worsening weakness due to muscle wasting. 

In the final stages of the disease, it becomes difficult to speak, swallow and breathe, eventually leading to paralysis and death within a time span of just a few years.  The cause of the disease is unknown, with only 5-10 percent of cases due to an inheritance from parents. 

The death rate for patients with ALS is alarming. Eighty percent of patients diagnosed with the disease die within the first five years, and less than 5 percent are able to live up to 20 years and onward. English theoretical physicist Stephen Hawking, 73, is one of those rare exceptions. 

“It’s worse than cancer. It’s probably the worst thing you can get,” Majed told The Arab American News.

Doctors told Majed’s brother, Wissam Majed, 29, that he only had a few years to live when he was diagnosed with ALS last year. He began developing symptoms in late 2013, when he experienced muscle wasting in his thumbs. 

Doctors originally believed it was Carpel Tunnel Syndrome as Wissam began to experience stiffness and pain in his stomach and biceps as well. But in a span of four months, his condition only worsened. Stiffness and twitching soon traveled to other areas of his body. 

Wissam was finally diagnosed with the disease after a neurologist referred him to an ALS Specialist. 

“My brother was freaking out,” Majed said. “He got depressed and really anxious and lost 10 pounds in one week. The doctors said there’s no cure or treatment. There was only a drug called Rilutek that has shown to give maybe two more months of life expectancy.”

Majed said he and his family were devastated at the news of his brother’s disease. They felt hopeless after doctors didn’t provide Wissam with many options. 

Majed soon began conducting research and came across a small pharmaceutical company called Genervon, which discovered and began administrating a drug called GM6 in 2013.

Now he said he and his family have hope, as GM6 is being described as “the master regulator of the human nervous system” and has proven to be dramatically effective during two trial periods on ALS patients and victims of other neurological diseases such as Parkinson’s Disease.

During the two trials, the company discovered that the drug had slowed or stopped progression of ALS for seven out of eight patients. It also dramatically slowed the decline in forced air capacity in five of seven ALS patients. 

The drug’s biggest success story was the impact it made one long term ALS patient who was diagnosed more than 10 years ago. Two weeks after being treated with GM6, the subject experienced his first improvement after doubling his swallowing volume. 

“There hasn’t been any positive results like this for an ALS trial ever,” Majed said. “I’ve been following it for a while now and the trials they’ve done haven’t had any side effects. It’s very safe and to their surprise, all the preliminary clinical measurements of the disease’s progression have slowed or stopped.”

The uphill battle from here on out will be to try to get GM6 approved by the FDA. Majed started a petition on change.org. urging the FDA to include the drug on the Accelerated Approval Program. If the drug were to go through FDA approval at a normal pace, more ALS patients will have fallen victim to the disease by the time the drug reaches its third trial phase.

Majed discovered that he was not alone in fighting to get the FDA’s attention. He merged his petition with that of a man in California who is also suffering with ALS and is calling for GM6 be approved by the FDA. The petition has so far been signed by more than 120,000 people.  

Majed is calling for the FDA to be more responsive to a disease that is diagnosed in 5,600 people annually. At any given time, over 30,000 Americans are suffering with ALS. 

“This is bigger than ALS,” he said.  “The FDA needs to be more responsive to patients with terminal diseases that have no available treatment. They need to start doing things from a patient perspective moving forward.”

ALS is sometimes better known as “Lou Gehrig’s Disease” after the New York Yankees baseball player who died of the disease in 1941 at age 37. He was portrayed by Gary Cooper in the 1942 film “The Pride of the Yankees.” The disease was thrust into the national spotlight in 2014 when the “Ice Bucket Challenge” took the nation by storm and helped raise awareness and funds for the ALS Association. However, the organization was criticized for allocating many of the donations towards administrative costs instead of towards research and patients with ALS.  

Majed is hoping the local community will join him in the fight to get GM6 approved by the FDA as time is running short for his brother. He added that he’s watched his brother’s life drastically change within the last year.

“He stays at home all day; he doesn’t want to leave the house,” Majed said. “He’s having a really hard time dealing with this. It’s affected his hands, his upper body strength; his shoulders are weaker now. His legs are still strong, but because of the stiffness, it’s hard for him to walk. His speech is deteriorating. It’s becoming hard for him to communicate.” 

There have been several success stories of patients diagnosed with ALS. Majed said he and his brother Wissam are big fans of Hawking, who was diagnosed with ALS when he was 21 and has beat the odds for more than 50 years. 

Majed also said his brother is okay with being open about struggling with the disease because the family wants to raise awareness on treatment possibilities that could end up saving lives. 

“You would never think that it could happen to you or someone in your family, but no one is immune to it,” he said. “People should get involved and sign the petition to support what we are trying to do. You never know when it can affect someone you know.”

To sign Majed’s petition, visit //tiny.cc/60rdsx. To learn more about GM6, visit //www.genervon.com/genervon/.