Help Chris Beck Keep Crossing Finish Lines

 

Happy Holidays from the Beck Family!

 

We are opening this fundraiser and page to continue to share Dad's story, any updates, and raise the necessary funds to help with the cost of his illness. Our family has come to the point where we would be grateful for any assistance to help pay for Dad's medication, quarterly visits to the Mayo Clinic in Jacksonville, and expected medical bills for the upcoming year. We have also had to outfit Mom and Dad's home with quite a few modifications to help Dad get around, take a shower, and sleep comfortably. 

 

We share these details with you not to make you feel bad, but to share the reality of the costs of progressing ALS. 

Dad also recently received and is using his electric wheelchair. We are hoping to find a vehicle that accommodates the transport of his cool new chair! We all know how refreshing it is to get out of the house for a drive, go to dinner and a movie, or spend the day out with family. I know that Dad enjoys having the opportunity to still "walk" along some of his favorite paved running trails or simply watch his grandsons explore at the playground. 

Finally, we have the dream of helping Dad "run" a few more races - specifically the 2022 Peachtree Road Race - by purchasing an adapted wheelchair made for running. Somewhat like a jogging stroller but created for disabled adults, the Kartus wheelchair would allow for Evan, Brian, and I to push Dad along a race course. The chair costs several thousand dollars. We would love to extend Dad's "running days" and know that he and Evan would get incredible use out of it (as Evan has been working on building upper body strength to assist with Dad's care). They would once again have the chance to run together every day.  

If you would feel more comfortable providing another form of support - please reach out! If you have any connections in the medical world that could help gain him access to a new trial - reach out. If you would like to include him in your thoughts or prayers - reach out. If anything, a prayer for a slowed progression, eased pain, and a sense of peace, is incredibly appreciated.

We hope you all are truly soaking up the joy and family traditions that come with this time of the year. Our family plans to ALL be together, in Florida, to celebrate Christmas! We are looking forward to the hilarity and fun of a packed house of 12 people. 

Thank you - truly - for all of your continued support. ♥️

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If you have not heard Dad's story yet - here is a bit of the backstory that we shared a few months ago.
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I called my Dad last Saturday to hear his voice, see what he was up to, and to catch up. He picked up, and in typical "my Dad fashion" I could barely hear his "Hello!" over the loud music in the background. When we were growing up (and to this day) Dad would always listen to his albums so loud as he did projects in his shop or worked in the garage. This Saturday, he was listening to The Rolling Stones 1971 album, Gimme Shelter. Our conversation quickly led into a story he had never shared with me before. He was a bit emotional as he told me that the first song he ever learned to play on the bass guitar was the first song of the Stones' '71 album - "Jumpin' Jack Flash." He would come home from guitar lessons, put on the album, and work through the notes until he figured it out. And he eventually did  
These little stories and memories are absolutely invaluable to me at this point. I desperately try to remember the sound of his voice -- although now slower and different.

 

Dad was diagnosed with ALS this Spring. Our entire nuclear family gathered via a video call as my parents shared the news. We had all prayed for anything but that. My Dad?! How can that be? He is active, and healthy, and hell, he climbed and summited two 14,000 foot mountains with Brian last Fall. After countless doctor's visits, tests, and physical exams, this was not what we wanted to hear.

 

ALS, or amyotrophic lateral sclerosis, (also known as Lou Gehrig's disease) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. "A" means no. "Myo" refers to muscle, and "Trophic" means nourishment – "No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region. Those with ALS lose their ability to walk, talk, eat, and eventually breathe.

 

There are two different types of ALS, sporadic and familial. Sporadic, which is the most common form of the disease in the U.S., accounts for 90 to 95 percent of all cases. It may affect anyone, anywhere. Every year, 5,000+ people in the U.S. are diagnosed, and my Dad happened to be one of those people, this year.

 

Many of you know that he is and has always been an incredibly active person. His running "career" is impressive, with a consistent, methodical schedule that has provided him an outlet and way to relax and challenge himself. Dad even inspired each of us, his four children (+ Brian), to run a marathon - what?! To know and watch his running days slow down and see that era come to an end is heart-breaking.

 

And yet… as much as this diagnosis has completely rocked our world in the past months, we have HOPE.

 

Recent years have brought a wealth of new scientific understanding regarding the physiology of this disease. There are currently four drugs approved by the U.S. FDA to treat ALS (Riluzole, Nuedexta, Radicava, and Tiglutik). Dad currently has access to one of these and my mom is making calls every day to gain him access and approval for any or all of the others. You would not BELIEVE the amount of effort and number of calls that goes into the approval process for a medicine that has the potential to slow the progression of or help aid someone with a fatal disease. It's absolutely mind-boggling and, honestly, frustrating.

 

Additionally, studies all over the world are ongoing to develop more treatments and a cure for ALS. We hope that Dad qualifies and is approved to be a part of one of these clinical trials.

 

As I sit on my porch tonight, writing this, I am so damn grateful for those little conversations and memories that my Dad has shared and made with me. I see him and the way he has lived his life -- taking the "long cuts" driving home to explore different areas and "connect the webs (as he calls it), enjoying a cool swim in the pool after a run, and never failing to give us a goodnight "big squeezy hug" when we visit -- and see that he finds happiness in his every day.

 

I leave you with this little message below and hope that, if anything, this unfortunate news of my Dad's gives you a little spark to WAKE UP and find something in your everyday that brings you happiness.

 

“For most of life, nothing wonderful happens. If you don’t enjoy getting up and working and finishing your work and sitting down to a meal with family or friends, then the chances are that you’re not going to be very happy. If someone bases his happiness or unhappiness on major events like a great new job, huge amounts of money, a flawlessly happy marriage or a trip to Paris, that person isn’t going to be happy much of the time. If, on the other hand, happiness depends on a good breakfast, flowers in the yard, a drink or a nap, then we are more likely to live with quite a bit of happiness.”

- Andy Rooney

 

(Dad and Julia training for her first marathon.)