Raising Funds, Awareness About ALS And Never Forgetting The "Reasons For The Ride"

Brian Ennesser reflects on his BIKE 4 ALS efforts and how the charity has been making a difference and keeping the memory of his mother alive.

Outside of the Cranford Hotel last Sunday morning, the crisp, fall air was thick with anticipation and excitement as the Cranford community poured into the streets, anxiously awaiting the arrival of Brian Ennesser and his troop of riders to return after a four-day, 400-mile ride to raise awareness and funds for BIKE 4 ALS, a charity that Ennesser founded two years ago after his mother passed away from ALS, just three months after she was diagnosed. This year, BIKE 4 ALS has raised more than $10,000 for the ALS Therapy Development Institute.

Denise Miller was one of the many residents who came out to support BIKE 4 ALS.

“I was very close to Brian’s mother Lois,” Miller said. “Every year since Brian started riding for BIKE 4 ALS, my grandsons Connor and Christopher have donated the money they raise selling water outside their family’s annual garage sale to BIKE 4 ALS."

Lynn Carroll also came out to support BIKE 4 ALS.

“My daughter Katie is a pediatric oncologist who treats patients with ALS. Her boyfriend, Tony Lee is riding is riding his Harley alongside Brian with two other members of the Archangels. We’re very excited to see them arrive,” Carroll said.

The Archangels Motorcycle Club of New Jersey is comprised of law enforcement officers, military personnel and public servants. This year, three state troopers including Tony Lee, Tom Espinoza, and Ken Lutz, a good friend of Ennesser’s rode alongside the bikers from New Brunswick to Cranford.

“I knew Brian’s mom, she was like family to me. We wanted to come here today to show our support for Brian and join in the fight for a cure,” Lutz said.

Mike Anderson met Ennesser on the Tristate Trek, a 270 mile bike ride from Boston to New York to raise money for ALS TDI.  Anderson explained that his fiancée, Erin McGovern who also participated in the Tristate Trek lost her Uncle Jim Sloan to ALS in 2009.  Assistant Commander James Sloan was a Secret Service Agent.

“You always think that the Secret Service men are indestructible,” Mike said. “Brian, Erin and I bonded because of we’re all from Cranford. This is our signature ride,” Anderson stated.   

In addition to being one of Ennesser’s closest friends, Anthony Sciarriallo lost his Uncle Dominick Calabrese Jr. to ALS in April of 2008. Despite the tragic connection he has with this cause, Sciarriallo, like the rest of the crowd stood outside the Cranford Hotel with big smile on his face, eager to share in the excitement.

“Last year BIKE 4 ALS rode 500 miles over five days from New York Federal Plaza all the way down to Virginia Beach. If you know Brian, when he puts his mind to something he just goes for it. Last year we raised 15 thousand dollars for the ALS Philadelphia Chapter,” Sciarriallo said.

Sciarriallo went on to explain what he would like to see BIKE 4 ALS accomplish. “We want to focus on helping families affected by ALS as opposed to simply contributing to another charity. We want to get to see the improvements in individual lives. You can only do so much when somebody else is directing you where to go.  Now we can run with Brian’s vision and support him in his fight against ALS.”

In a magnificent flash, Ennesser and his team of cyclists rode into town past the Cranford Hotel escorted by the Archangels, New Jersey State Police and local police from Edison, Clark and Cranford. The party was greeted with triumphant cheers from the crowd as Ennesser and his fellow cyclists were embraced by the Cranford community.  Later, Ennesser sat down with Patch to share his story.

“My mom was diagnosed with Bulbar onset ALS in July of 2009.  A lot of ALS patients are misdiagnosed because there is no test for ALS you can’t just get a blood test and immediately identify what’s wrong. My mom was originally diagnosed with Parkinson’s disease. With Bulbar ALS, the progression of the disease starts in the face instead of with the limbs. This is the worst type of ALS one can get. My mom probably had this disease for a year before she passed away but she was only alive for three months after being diagnosed,” Ennesser said.

Ennesser went on to explain this disease. “Lou Gehrig’s disease takes away a person’s dignity. You become a prisoner in your own body. Mentally, your brain is working fine. You aware of everything that is going on around you, you just can’t move, talk, or speak.”

Ennesser explained how his mother persevered in spite of her suffering. Lois would force herself to summon the strength to say “I love you” to her family every night. She kept her position at the Cranford Health Department as long as she could, refusing to use a cane or a walker until her doctors told her she had to stop working.

“ALS may have robbed my mom of her life but she never let it beat her or define who she was,” Ennesser said. “Whenever you speak to any family that has gone through this, you can see in their eyes how angry and sad they are. ALS steals your voice. That’s why at BIKE 4 ALS we say that we are giving a 'voice to the voiceless.'” 

After his mom passed away in September of 2009, Ennesser began to talk with close friends about how he would honor his mother’s memory.

“I decided that I wanted to cycle from New York to Virginia Beach in memory of my mom and Anthony’s Uncle Dominick to help raise money for ALS research,” he stated. Ennesser then approached his trainers Greg Cordasco and Ian Huges who donated their time at Liberty Cycle in Basking Ridge to help him train.

Ennesser was also joined by two other cyclists.  “I met Paul Acomb and Paul Stockham through the cycling club at Liberty Cycle. They offered to ride with me. If it wasn’t for those two guys, those days out on the road would have been a lot tougher,” Ennesser said.

In addition to the three, Andrea and Mark Jenkins and Matt and Maryanne Shorts rode on the first day and the last day.

“Those are the days that we are in New Jersey. We had the same riders this year as well,” he added.  

Ennesser went on to explain why he chose to end in Cranford this year, instead of taking the same route.

“No one knew who we were in Virginia Beach. Erin McGovern’s uncle Jim Sloan started out as a Cranford Police Officer, my mom worked here in Cranford, and I was born and raised here in Cranford. Cranford means a lot to all of us at BIKE 4 ALS,” Ennesser said.

This year, Brian and his team rode from Basking Ridge to the Mount Laurel Police Department to honor Anthony’s Uncle Dominick Calabrese who had served there. After that, they rode to Washington D.C. where they stopped at the Secret Service Headquarters to honor Jim Sloan. “The Secret Service welcomed us,” Ennesser said. “It was like having another finish line party. The Secret Service told us that they want to be a part of our ride every year.”

The yearly ride is not the only fundraising event that BIKE 4 ALS conducts. In November of 2010, Jen Fleischer, who owns a branch of Multisport Fitness in Mount Bethel, Pennsylvania donated her time to hold a spin-a-thon to raise money for ALS TDI.

“The event was really successful. I spun for two hours on a Real Rider bike. I am in the process of booking another similar event in New Jersey,” Ennesser said.   

Sciarriallo and Ennesser are in the process of completing the application to become a 501 ©3 Nonprofit organization. “We have been a corporation for about 7 months now have been a tax exempt not for profit for about two months,” Sciarriallo explained. “Becoming a nonprofit 501 ©3 is a long process but once we complete it, we won’t have to rely on other charities."

When asked about what he sees as the future of BIKE 4 ALS, Ennesser responded saying, “The happiest day for me will be when I have the lawyers for BIKE 4 ALS draw up the dissolution papers because that means we found a cure."

BIKE 4 ALS has been building a network of resources nationwide so that his staff can direct people to ALS Association Chapters, support groups and clinics in their area or ship medical equipment to ALS families who can’t afford it. Ennesser disclosed that people with ALS all over the country from Minnesota to Utah have already reached out to BIKE 4 ALS through Facebook and the website for assistance.

“No matter who you are or what you are, ALS bankrupts people. The amount of care and equipment that is required to care for an ALS patient adds up to a significant amount of money,” Ennesser explained. “A lot of people like my mom, don’t want to go to a hospice, they want to stay at home and be around their family. Some people don’t have that option and in certain hospitals, they still don’t know how to deal with this disease and the patient is treated very poorly."

As a Veteran of the Iraq War, now working as a federal agent, Ennesser has noticed a disturbing connection between working as a public servant or veteran and contracting ALS. He expressed his concern that although some departments will transfer those with ALS to administrative positions, police departments do not recognize ALS as a service connected disease. This means that many officers are often fired because departments may claim that an ALS afflicted Officer who may be weakened by the disease could be putting other’s safety at risk. Ennesser explained that Veterans are not forgotten, but they are pushed to the side because of this disease.

“The Military just made ALS a retroactive disease which means that if I came down with ALS, I could receive full disability benefits from the Military,” Ennesser explained.

As BIKE 4 ALS continues to grow in size and impact, Ennesser never forgets his “reasons for the ride.”

“I wanted our memories of my Mom, Dominick, and Jim to stand out. I knew that the best way to do that was to create our own charity,” he said.

There is no ALS Association or ALS TDI Chapter in New Jersey. Eventually, Ennesser hopes that Bike 4 ALS can bridge the gap between all of the ALS Association Chapters.

“I wanted people to know that BIKE 4 ALS brings a voice to the voiceless. The more voices we have out there fighting for a cure, the stronger we become," Ennesser said. "The only way we will find a cure is if we all communicate together, working towards the same goal. It’s kind of like a bike race. Even though we are all on separate teams, the only way to reach the finish line is if we all work together."

John Leustek September 21, 2011 at 05:31 PM
wow... very touching!
Angela Cornelius September 22, 2011 at 04:40 PM
WOW....great article!! Congratulations to Brian Ennesser, the entire Bike 4 ALS Team, and all the "unsung heroes....those behind-the-scenes workers" who made the ride a phenomenal success! Dr. Angela Cornelius
The young mam speakin in.this.article - not sure about some of.that info - VETERANS shoild be covered tjere.are.3 types.of ALS - one of whicb is.EXPOSUR.TO A CERTAIN.CHEMICAL. reachout via.email if.you would like to.discuss.
No one should be under hospice.or.neglected care - heart wrenching.to hear.this!


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