What is ALS?

(from the ALS Association Tennessee Chapter)

ALS was first found in 1869 by French neurologist Jean-Martin Charcot, but it wasn’t until 1939 that Lou Gehrig brought national and international attention to the disease. Ending the career of one of the most beloved baseball players of all time, the disease is still most closely associated with his name.

Amyotrophic lateral sclerosis (ALS) 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 progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become paralyzed.

Today, there is no cure for ALS. The mean survival time with ALS is three to five years, though many people live 10 or more years.

Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.

Gradual onset, painless, progressive muscle weakness is the most common initial symptom of ALS.

• Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps, and twitches.

• When the breathing muscles become affected, ultimately, people with the disease will need permanent ventilatory support to assist with breathing.

• Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected.

Life Since ALS Diagnosis

God didn’t place Stephen Clinton in Franklin, Tennessee by mistake! Since being diagnosed with ALS, Stephen’s family, close friends and so many in the Franklin community have rallied and supported Stephen in so many ways!

Stephen is still able to work and lives close to downtown Franklin in a home that was modified internally and equipped with a wheelchair ramp out front. (Thank you ShareBuilt!).

Stephen’s oldest son Joseph and his wife Kenzie (Watch the video of Stephen’s father-of-the-groom speech below from their wedding in November.) live just a few miles away from Stephen. Anne Holland lived with and cared for Stephen this past summer before returning to Mississippi State for her junior year. Andrew, a senior at Franklin High School, gets to hang with Dad a lot!

A huge group of friends known as “Team Stephen,” has stepped in to help Stephen with housework, rides to appointments, grocery runs, meals, and more.

While Stephen is blessed in so many ways, the disease is progressing, and what most of us take for granted - standing up from a seated position, cutting our food with a knife, putting a shirt on by ourselves, opening a medicine bottle, walking from the bedroom to the bathroom, or speaking in the normal voice you’ve had all your life - sadly, these are only a few of the things Stephen no longer finds easy.

Stephen’s Needs & How You Can Help

Statistics differ per source, but most agree the average ALS patient requires $250,000/year out-of-pocket for medical care, medicines, non-medical care and related equipment.

A quick fundraising summary to date:

• Through an event and silent auction in the Fall of 2022, $60K was raised. These funds fully paid for Stephen’s lease in 2023, modifications to his master bedroom and bathroom, construction of a wheelchair ramp, in-home care, and helped pay for many of the expensive medicines that Stephen currently takes. Mojo’s at The Factory graciously donated the space and about 225 people showed up!

• In November 2023, $17K was raised through a bourbon-tasting event at The Whiskey House in Nashville, a 501c3. Another Whiskey House event is being planned for Spring 2024.

• Stephen’s church home, Cornerstone Presbyterian Church, made a donation that will cover Stephen’s lease for 2024!

• Generous Life, a 501c3 in Franklin offered to be the host of this website, allowing all financial gifts and donations to be tax deductible. (The story of how Team Stephen was introduced to Generous Life, a 501c3, is truly a testament to how God loves Stephen and will provide for his needs. Please ask when we see you, we’d love to tell you the story!)

Help Us Raise $150,000

We need your help, support and radical generosity!

Team Stephen is confident that God will provide for Stephen, and we invite you to participate in his care and help provide for his financial needs. 

• Stephen’s need for in-home care, both medical and non-medical will continue to increase, along with the costs for these services. Stephen currently pays for 4 hours of care per day and feels that he will soon require 12 hours/day of in-home care which could range from $7,500 to $12,500 per month.

• Stephen will soon be unable to get in and out of a car and will require the use of a wheelchair-accessible van. The cost of leasing that van, plus equipment is estimated to be at least $1,500/month.

• Updates about Stephen, fundraising opportunities and more will be added on the Stephen Clinton Blog page at this website.

On behalf of Stephen and his family, thank you for your consideration in supporting Stephen’s journey with ALS.

Generous.Life is spearheading this project of collective generosity. All donations received are tax free. You will receive a tax deduction for your gift.

DONATE NOW

Thank you in advance for your sacrificial generosity!