Support Ryan's Fight Against ALS

Support Ryan in his Fight against ALS

At just 37 years old, our youngest son, Ryan, was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig's disease). Just days before the diagnosis, Ryan earned his doctorate in creative writing and had an excellent future as an assistant to a prominent linguistics professor at Rice University in Houston. Everything he had worked so hard for was coming to fruition, and life seemed so promising. As my husband and I prepared a fun trip to Houston to celebrate his graduation, Ryan found out that what he thought was a muscle injury in his left leg was actually a symptom of a neurological disease. We rushed to Houston to be by his side as he underwent final tests, which, on May 1, 2025, led to the devastating diagnosis of ALS.

For those unfamiliar with ALS, it is a progressive neurodegenerative disease that causes muscle weakness, paralysis, and ultimately leads to respiratory failure. ALS is rare, especially in someone as young as Ryan. Ryan’s ALS is what they call limb-onset, which means his symptoms began with weakness in his legs and arms, leading to a loss of his ability to walk on his own and limiting his ability to reach or lift objects, thus robbing him of his ability to perform the most basic everyday tasks without assistance. ALS has no cure, and the average life expectancy is 2-5 years. But many people, especially those as young as Ryan, live longer. While approved treatments only slow the progression of the disease, promising new research over the last few years has resulted in new therapies that may stop or even reverse the progression of ALS. This gives us hope and gives Ryan the determination to beat the odds.

Ryan is a very talented poet and musician, with infinite creativity and passion. He thinks in metaphors, finding inspiration for his poetry in everyday moments. His poetry and fiction have been published in numerous print and online literary collections, captivating readers with their depth and imagination. A drummer since the age of 14, he finds rhythm in both his art and life. Wherever he goes, Ryan seeks out fellow musicians for spontaneous jam sessions. His unwavering commitment to the creative community, through his roles as the editor of the Black Warrior Review at the University of Alabama and the Gulf Coast Journal of Literature and Fine Arts in Houston, has offered encouragement and support to other writers and poets. Ryan's fun-loving and generous spirit has earned him many long-lasting friendships with childhood friends, fellow students, bandmates, and university professors he has studied under.

Despite the challenges of his disease, Ryan decided he wanted to continue working while taking advantage of the outstanding medical services available in Houston. As a result, Bob and I moved from our home in Chattanooga into an apartment with him in Houston to provide much-needed assistance and support. Our oldest son, Brent, who still lives in our home in Chattanooga, is very supportive of his brother Ryan and our situation. He is helping us with the financial difficulty of maintaining two households.

The financial burden of managing ALS is significant. Many costs are not covered by insurance, and with so many doctor's appointments and physical therapy sessions, co-payments add up quickly. To make it more difficult, Ryan’s insurance policy will not cover an ALS Clinic, making it very hard for Ryan to get the multidisciplinary care he needs. We have already made many personal and financial sacrifices to support our son, but the reality is, we need your help. Your generous donations will directly fund Ryan’s ongoing medical needs and offer him hope, knowing that he is not alone in this fight. Every donation, no matter how small, brings us one step closer to meeting Ryan's medical needs and providing him with the resources he needs to live his life to the fullest.

We have HOPE for the best outcome for Ryan, with a focus on two main goals:

1. To provide Ryan with the best medical care available today and enroll him in clinical trials that offer access to promising experimental treatments.

2. To ensure Ryan has the best quality of life possible while he battles this devastating disease. This includes purchasing medical equipment, mobility devices, and making home and vehicle modifications, all aimed at allowing him to continue engaging meaningfully with his friends and family.

Your generous donations, no matter how small, will help us meet these goals, directly fund Ryan’s ongoing medical needs, improve his quality of life, and offer him hope, knowing that he is not alone in this fight. If you are unable to contribute, your words of encouragement for Ryan are still priceless.