Fundraiser for local hero John Van Mannekes

The Ventura Fire Foundation is proud to be raising funds in support of retired Fire Captain John Van Mannekes. With his career cut short by a devastating ALS diagnosis, John and his family need the community’s help to offset sky-high equipment and caregiving costs.

Please make your gift today in support of a man who has always lifted up his community.

John’s Story

Tiny muscle spasms were the first sign. Fasiculations, John Van Mannekes would later learn they were called. Unremarkable at first, a minor annoyance. Until they didn’t go away.

An internet search suggested it could be as simple as a lack of potassium. “Just keep an eye on it,” doctors told him. But the spasms were enough to interfere with his work as fire captain. A dedicated cyclist and career firefighter, John knew his body. He knew his strength, his stamina, his ability to endure. And he knew something was very wrong.

More doctors’ appointments. A series of MRIs, CTs, brain scans, blood tests… It took months before the diagnosis came in.

ALS. Amyotrophic lateral sclerosis, or Lou Gehrig’s disease as it’s often commonly known. The worst case scenario.

The news was devastating. 

John began to process the reality of what his life would become with his wife and two teenaged sons. Fear and grief were rapidly setting in.

John with his family before the diagnosis.

Exactly a week after the diagnosis, he accompanied his son on a drive to work. They were headed for the beach where his son was a junior lifeguard assistant.

Things felt normal for a minute.

Until another driver suffered a heart attack and lost control of his car, colliding head-first with John and his son. Unlike the agonizing months spent waiting for his ALS diagnosis, this time John’s life changed in an instant. The brutal impact snapped his sternum in half and severely injured his hand.


Already losing mobility to ALS, the injuries meant major complications for his health and ability to work.

After 21 years as a Ventura City firefighter, John is no longer able to do the job he loves to do. His family has had to move into a one-level home. The medical bills are multiplying. Caregiving and equipment costs are prohibitively expensive.

John has helped countless members of our Ventura City community. Now he and his family need your help so he can access vital care.

John at one of his treatments

Being a firefighter means the world to John. He’d be the first to tell you it wasn’t an easy journey to land his dream job… In fact, it took him years. But his determination paid off. He got his foot in the fire department door as an Explorer, a program designed for young adults to learn more about working in the fire service. The experience confirmed what his gut already knew: this was the career he was meant for.

But getting hired proved far more complicated than expected. John persevered, testing with over 40 fire departments across California, some more than once. He put himself through the fire academy. He went to paramedic school, knowing the demand for paramedics in fire departments was growing. Finally, after a year working with a private ambulance company, he received the offer he’d been hoping for: Ventura City. The department had noticed his work ethic on emergency calls. At last, he was going to be a firefighter.

That same work ethic shone through as he began his career with the department. Almost as soon as his probation ended, John became a relief driver. He earned his certification as a Fire Officer. He went to HAZMAT school. He just kept pushing. After only four years as a firefighter-paramedic, John was one of four candidates to successfully pass his Engineer’s exam. He received a promotion to Engineer. And then, even more quickly, John earned the title of Fire Captain – a position he’s held in Ventura for over 14 years now.

John on one of many firefighting missions.

“As a Fire Captain, you lead by example,” John says. “You are in charge of and responsible for the engineer and the firefighter at that station on that shift. You kind of set the tone… It’s a lot more responsibility.”

A responsibility John has risen to admirably. The life of a firefighter can be grueling. You might be the last person somebody speaks to before they pass away. You’re tasked with saving children, babies, seniors – the most vulnerable members of our community. You see people lose their homes. The tragedy takes its toll.

But in spite of the difficult nature of his work, John has always remained firmly anchored by the love of his family. “Having your own kids completely changes your perspective,” he explains. “And after the diagnosis, more than ever, my family means everything to me.”

A recent photo of John with his son and wife.

It was the support of his family that allowed John to commit himself so fully to his career. Expanding his work beyond Ventura, he continued to take courses and network until he was successful in his bid to join a US Forest Service federal management team (CIIMT) as a Medical Unit Leader. Working with CIIMT, John helped fight fires in places as far flung as Texas, Idaho, Wyoming, Colorado, and Washington. He even deployed to New Jersey to help deal with the aftermath of Hurricane Sandy. His heroism saved lives from coast to coast. And now his family needs your help to better his.

In addition to his passion for firefighting, John nurtured a passion for cycling. It was his coworker and best friend Robert Neary who told him, “You ought to get a bike and start riding your bike. Stop beating up your joints.” John followed his advice. Never one to do anything by halves, he worked his way up to biking 50 miles on an average day. And never one to forget his community, he soon found a way to channel his love of biking into a charitable cause.

Neighboring Ventura County fire captain Jack Nosco reached out to John and Robert with the idea of doing an 80-mile bike ride in honour of his late brother. The ride would aim to help families pay the medical expenses associated with serious illnesses. In their first year, they expected a turnout of 10-15 local firefighters. Instead, more than 100 people participated. It continued to grow into the thousands. Today, the ride has raised more than $650,000 in financial assistance for families dealing with medical debt. John has ridden in five of the Nosco Memorial Bike Rides. He intended for 2016 to be his sixth.

John cycling in the mountains.

Instead, John found himself a beneficiary of the last ride. So devoted to helping others, he now desperately needs the help of his community in return. But the medical bills continue to add up for his family. Your gift today can give John access to critical care and equipment to help manage his ALS symptoms.

ALS is a cruel disease. Some have described it as being encased in a glass coffin. Day by day, you lose control of your own body. Neurons responsible for muscle function quite literally die. While ALS begins with muscle stiffness and spasms, it quickly progresses as muscles shrink in size. Eventually, you begin to struggle to do the most basic of tasks. Speaking. Swallowing. Breathing.

There is no cure for ALS yet. But there is hope. Technology has given those suffering from ALS a way to continue communicating past the point where their vocal cords give out. While John still has his voice, he is studiously recording his own speech in five-word sentence increments. If time allows, he will save over 1,600 of these sentences to create a word bank. His loved ones will still be able to hear his voice rather than that of a computer when his speech is gone. It’s a project he focusses on in the mornings, before the end of the day when fatigue kicks in and his words begin to slur. It’s a chance to give his family some small comfort as ALS takes its inevitable toll. But it’s not enough.

John undergoes more ALS-related testing.

Recent fundraising efforts have led to extraordinary leaps in ALS research. Stem cell therapies are being explored around the world. So much of this journey is waiting: Waiting for the next research breakthrough. Waiting for drug approvals. Waiting to see what your condition is like from day to day.

John’s family is doing everything they can to extend and better his quality of life. But the caregiving and equipment bills add up quickly.

That’s why the Ventura Fire Foundation is asking you to give back to John Van Mannekes today

After 21 years of tireless community service, John and his family are in need of your financial assistance. Your encouragement. Your support. This is a unique opportunity to say thank you to a man who has spent his life working for the wellbeing of others.

John drops by a local elementary school to read to students.
 
The cruel truth of ALS is that it disproportionately impacts healthy, active individuals in the prime of their life. After a demanding career, John should be working towards the golden days of retirement and savoring each moment with his wife and children. Instead, he is living in uncertainty and fear.

Despite this, John works hard to remain positive. “Every day you’ve got to have hope and try and be optimistic and live for the moment,” he says. “But don’t get me wrong, there’s times where you have those down moments and you go ‘What happened?’”

No one can prepare for the worst.

A minor symptom that rapidly progresses to a chronic and incurable disease. A driver crashing head-on into your car just a week after a devastating diagnosis. A condition you have so little ability to delay or even treat. It’s the type of story that hurts just to hear.

But it’s also a story of hope.

A story of a man who has tirelessly given of his labor and generosity over the last two decades. A story of a family devoted to caring for him as well as he has worked to care for them. A story of a community that can come together to better the lives of a much-loved public servant. Will you do your part to help the Van Mannekes family today?

Your generous gift will help the Foundation support John, his wife, and his sons through this difficult time. You can ease the significant financial burden of his care. You can give access to essential care and medical equipment. You can change lives, the same way John has changed lives throughout his firefighting career.

Please donate today and help this local hero when he needs it the most.