Aston 1st Ward Commissioner Mike Fulginiti and his wife Andrea are asking the community to help Mike’s fight against ALS by signing a petition to the White House, which would give him the RIGHT TO TRY a new medication.
By Loretta Rodgers.
Aston 1st Ward Commissioner Mike Fulginiti is fighting for his life and he is hoping his friends, neighbors and the community will help.
The 57-year-old longtime resident and businessman was the picture of health until he woke up one morning in August 2013 and noticed his speech was slurred.
After a year of doctors appointments and intense testing, Mike finally received an answer. He was diagnosed with bulbar onset Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. The illness was brought to national attention by Gehrig, a professional baseball player in the 1930’s, who bravely fought and eventually died from the disease.
“We were devastated,” said Mike’s wife Andrea, a teacher at Coebourn Elementary School in Brookhaven. “It was terrible having to tell our three children that their father was given a death sentence. For the first week, we asked our friends and family to give us space, and they graciously complied. Then, we pulled together and decided to fight back.”
The Petition for GM604 – Please sign http://wh.gov/iWMcT
For Mike, a self-described fighter, even more difficult than the diagnosis itself, was finding out that only one medication exists to treat ALS, and that drug “Riluzole,” only extends the life of an ALS patient a mere two months.
“Totally unacceptable,” Mike said. “It is not in my DNA to give up. There has to be something else.”
Then, again a miracle.
The Fulginiti’s learned of the success of a trial drug by small company named Genervon Biopharmaceuticals. The drug “GM604,” has given the ALS global community – and Mike, some hope.
Genervon met with the FDA in February 2015 and asked that GM604 be promoted to the Accelerated Approval Program with post-marketing phase 4 requirements, therefore all ALS patients could have legal access to the drug immediately.
The Accelerated Approval Program also would guarantee the treatments be covered by health insurance.
ALS patients have until April 24 to petition President Barack Obama to request the FDA fast track GM604.
To sign the petition, please visit http://wh.gov/iWMcT on the web.
If 100,000 signatures are received, the White House MUST respond.
There has been no final decision made by the FDA to date, but a decision is expected sometime in April. If the FDA denies the request, it could be three years before patients could access the drug.
Many, including Mike, could most likely be deceased by then.
“This needs to happen and the time is now,” says an emphatic Mike. “I don’t have the time to wait. None of us with ALS have the time. Two people I know have died with this disease just since my diagnosis. This is truly a matter of life or death.”
Andrea questions the entire clinical trial process, especially with fatal diseases such as ALS.
“Why give an ALS patient a placebo?” she asks. “They are dying. Give them the real thing and the right to try.”
According to Andrea, the drug has also shown promise for those suffering with multiple sclerosis and Parkinson’s disease.
Most commonly striking people between the ages of 40 and 70, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action affected, patients in the later stages of the disease may become totally paralyzed.
At any given time, there are 30,000 Americans with ALS. It is incurable and usually fatal within two to five years.
In Mike’s case, the disease initially affected the bulbar part of the brain, which means his ability to speak and swallow has been vastly diminished. He has visible muscle fasciculations throughout his body and is now extremely difficult to understand.
He uses a special erasable board to communicate, and has become quite proficient at getting his point across.
“It is very frustrating,” he wrote. “There are things I want to say, and I know I am difficult to understand. I also cannot eat the things I used to enjoy because I constantly choke.”
Mike’s Diagnosis
Like many ALS patients, Mike went from doctor to doctor in search of answers. Over a 12- month period he endured countless rounds of EMG’s, MRI’s, CT scans, sleep studies, pulmonary function tests, blood work, and repeated neurological examinations.
He also received varied diagnoses.
One physician told him it was ALS and another refuted that diagnosis, stating the symptoms could be the result of another type of motor neuron disease, a stroke, exposure to heavy metals, or even an allergic reaction.
He was even told it could be stress and was advised to take a trip and “get away.”
Taking the doctors orders, he and Andrea took a trip to Hawaii.
In the year Mike sought a diagnosis, he consulted ear, nose and throat specialists, ophthalmologists, and neurologists at Hahnemann and Drexel University Hospitals; Pennsylvania Hospital; and the Hospital of the University of Pennsylvania.
In August of 2014, after waiting six months for an appointment, Mike saw physicians at Johns Hopkins Hospital in Baltimore who, after yet more testing, made a definitive diagnosis.
“It was so matter of fact,” Andrea said. “The doctor came in, sat down and told us that Mike had bulbar onset ALS. He said there was not much that could be done, and that the disease is fatal. He explained that there was no set time frame and that the progression is different with every patient.”
Ice Bucket Challenge
Within two weeks of being diagnosed, the ALS Ice Bucket Challenge became an Internet sensation. Andrea said she and her family made videos and encouraged Mike’s friends to do the same.
“Our grandchildren even got into the act,” Andrea said.
The couple are the proud grandparents of five beautiful children, who Mike would very much like to see grow up.
The Ice Bucket Challenge also provided a way for Mike to tell his friends, fellow commissioners, and the employees of his insurance/ auto tag business in Aston about his illness.
“Throughout this journey, God has really provided us with ways to cope with this disease,” Andrea said. “And the Ice Bucket Challenge could not have come at a better time.”
The ALS Association has reported that more than $100 million has been raised, but most importantly, the Ice Bucket Challenge raised awareness of the disease, it’s devastating effects and lack of available treatment.
Searching for a Trial
Mike refused to accept that there was nothing he could do. He refused to go home and just wait to die.
He and Andrea began searching for clinical trials across the country. They visited the Mayo Clinic, Emory University Medical Center, and the Carrick Brain Center.
“It was unbelievable,” Andrea said. “My husband was either told there were no clinical trials available at the time, or that he was still too healthy to participate. Can you believe that? He has a diagnosis of ALS and he is too healthy?”
Currently, Mike is involved in a program at the University of Pennsylvania for rehabilitation.
A Heartfelt Thank You
Even though the Fulginiti’s do not know what the future will hold, they are very aware of how many people care for them. From individual expressions of love and support to phone calls, emails, cards and prayers, they are very grateful.
“It’s been like a pebble in the water,” Mike said. “One stone hits and it ripples. I am so truly blessed with my family and friends. I want thank everyone who has reached out to me and to let you be assured that I am not giving up. I have way too much to live for.”
***Please sign the petition to help Commissioner Fulginiti and all those living with and fighting ALS. It only takes about 30 seconds and you could save countless lives. http://wh.gov/iWMcT
Thank You!