Gnarley Harley Fundraiser for ALS


John Jacobsen is an interesting fellow. He inherited a wild coming of age that included four wheelers, snowboards, mountain trails, house parties and a father who loved the motorcycle life enough to nickname his young son Harley.

You can imagine the typical Pocono Mountain lifestyle that was his until he, and his childhood sweetheart Maureen, broke free and willed a new reality in Center City Philadelphia.

But Harley could never shake off the mountains and he bought his first mountain bike and explored the trails that lead out of the city.

The next escape came when the young couple exited to the suburbs, procuring the ultimate fixer-upper in Chester County, Pennsylvania.

Harley threw himself into the project house and transformed systems and decor that hadn’t been touched since the 1960s into a showpiece in the suburban woods. All this time he was making friends everywhere he landed. Harley is, at once, affable and gregarious but there’s a deepness too. He’ll surprise you with a book he’s read or a difficult song he’s figured out on his beloved Martin guitar.

In between working on the East Vincent Township house and advancing up the career ladder, Harley continued to explore cycling as an outlet for relaxation and socialization.

Gnarley Harley ALS Fundraiser

He upgraded mountain bikes and started racing them. That led to cyclocross racing and the eventual purchase of a cherry road bike.

He cared for his stable of bicycles with love and precision and his knowledge of mechanics and specifications surpassed most. Harley embraced the cycling community and they embraced him right back. A ride with Harley on it was certain to include memories of uncontrollable laughter and watching him power up hills in front of you.

Not too long ago, Harley and Maureen had two children, Grace and Ella.

Life was breezing along for the perfect family until the unthinkable happened. Two severe cycling accidents—one involving a tree and one a car, shook Harley. He walked away from both but, not long after, he developed unusual symptoms that started to worry him…

ALS Fundraiser

…Weakness and shaking in a body that had been in peak physical form continued to escalate.

In early 2018, Harley was diagnosed with Amyotrophic lateral sclerosis (ALS).

ALS, or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.

The only positive thing discovered thus far is the association leading the way in global research– the ALS Association is a powerhouse non-profit, advancing research, care services, public education, and public policy—giving help and hope to people like Harley and people like us, that care about him. For nearly five years, as his health waned, Harley and his medical team explored every option including some experimental trials.

Now, as we approach 2022, we are letting the world know about Harley and hopeful that people like you will step up to help our friend.



 

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Gnarley Harley