Laurie: “Never Give Up. Never Surrender.” – Galaxy Quest

For a year we watched Gary’s (my husband) health slowly decline.
When we first noticed symptoms, we thought it was just the aging process. It wasn’t until he fell for the third time that we began to seek medical help. There are many steps you have to go through before you can finally get to a neurologist. Our first appointment with a neurologist was 3 months after he passed away. What we learned through this process is that if you accept the typical “medical route” you must be satisfied with waiting. We were bad at that.
Instead, Gary sought out a chiropractor with a neurological background and an ear, nose, and throat specialist. Not the typical route, but doctors who could get him to the tests that he needed. On a fluke (and by what could only be explained as the hand of God), they referred him for a test that happened to be with the Neurologist that my husband wanted initially. She was not “performing the test as a neurologist”. She was the only person who knew how to perform this certain kind of test. She met with my husband, and long story short, she took him on as her patient. She happened to be the top neurologist in our area whose specialty is in ALS and she diagnosed him with it that day and came up with a treatment plan that would start immediately. Two days later Gary passed away.
Gary was truly unique. He was self-less, friendly, and a helper to others. He had more than 400 people who attended his celebration of life, because he made an impact on so many others. We were warned by the venue that we were over capacity and that the Fire Marshall would have to shut us down if more people continued to come. Gary would want to help as many as he could who were struggling with his same diagnosis. In his honor, we do what we can through organizations like the ALS Network to support research, create care, and provide advocacy for those who are struggling through the medical system.
Gary had two favorite quotes that were much the same: “Never Give Up. Never Surrender” -Galaxy Quest and “Never, never, never give up” -Winston Churchill

Kathleen: Creating Hope

My brother Mike was diagnosed with ALS at the age of 47. He lived in Nelson, NZ with his young family, including a 4 and 7 year old. NZ has great safety net healthcare, but did not have any real specialized care for patients with ALS. He was really left alone to deal with this awful disease. My sister and I traveled back and forth to NZ to help my brother and his family get through this. He passed away in May of 2013, 2 years after diagnosis. I have seen what the ALS Network can do, and offers here in the US, and I had only wished my brother had access to the care, equipment, support and expertise that is available here through the work of the ALS Network. As a result, patients and families are not alone, they have support and hope for a better future.

Tina: Inspired by Kevin

What inspires me most is the strength I see in my husband Kevin every single day. ALS has changed so much about our lives, but it has not taken away his spirit, his humor, or his love for his family. Watching him continue forward with dignity, even as his body makes things harder, reminds me of what true courage looks like.

I am also deeply inspired by the ALS community itself. The way people come together—sharing knowledge, lifting each other up, and offering compassion—shows me that none of us are alone on this path. Every story, every connection, and every act of kindness inspires me to keep pushing forward, not only for Kevin, but for all of us navigating life with ALS.

Love, family, and resilience are what keep me going. And knowing that together we are stronger is what gives me hope.

Robert: Riding to Defeat ALS

I support the ALS Network because it’s working hard to find a cure to this horrible disease. My sister, Margy (Maggie) Butterworth, was diagnosed with ALS around 2003, at about age 50. She quickly went from an active, vivacious woman to a wheelchair-bound person – though her zest for life was still strong. Around 2005 I joined a group of people in the Santa Barbara/San Luis Obispo, CA, area with similar connections to the disease, who were working on fundraising ideas for what was then the ALS Association – and happened to all be avid cyclists. What we came up with was a 100 mile bike ride event that would include teams of a rider and his/her supporters (each team representing a person with ALS) with the teams competing for fundraising prizes. We named the event the Central Coast Century, and our team was called Team Maggie B.
I sent out letters to all my family members telling them about the event – and of course asking for donations. The response was amazing. Not only did I receive donations from almost everyone I contacted, but a total of 30 family members, many clear from the San Diego area, came to the event itself – and Team Maggie B. received the trophy for 1st place, Team Fundraising.
Margy Butterworth passed away in 2008.

Cara: Love you to the moon and back

In 2022 my recently retired mom started having difficulty speaking. She was diagnosed with ALS. She was a retired first grade teacher and even through her diagnosis she was still teaching in a new way. She taught us patience and tolerance. She was positive even though her health deteriorated quickly. Her sister moved in with my mom and dad to help with appointments. My mom up until her last days was still guiding me and leaving her mark in the world. She left behind to granddaughters and my brother had his first baby girl after she had passed away.

Peter: Supporting Scientific Discovery

Peter’s generosity was inspired by his own father’s ALS diagnosis in 1985, fueling his lifelong commitment to ALS research. Peter has always preferred to connect directly with the people who lead the programs he supports, and appreciates hands-on engagement with staff and volunteers, visits with researchers in the field, updates, and events hosted by the ALS Network.

As a former researcher himself, Peter understands challenges faced by scientists, which is why he has pledged sustained, multi-year support focused on scientific discovery. Peter has also included the ALS Network in his estate plan because he intends for his life and legacy to drive advancements in ALS therapy development — aiming for prevention, halting progression, and finding cures for ALS.

It is Peter’s strong belief in the effectiveness of the ALS Network’s integrated approach to accelerating scientific discovery and his experience with the organization that confirms his enthusiasm for powering the pioneering work of the ALS Network.

Ami: A Big Heart

Yanhong (Amy) Li, 李燕红 in Chinese, was born in 1964 in Jiamusi, Heilongjiang, China. Her father, Shunye Li, a renowned neurosurgeon and medical professor, and her mother, Yuxiu Wang, a chief nurse, were extremely compassionate and caring individuals. Both instilled in Amy a strong work ethic and taught her empathy for others.

Amy immigrated to the United States in the early 1990s with her 18-month-old son. She worked hard to improve her English and overcame the financial and academic difficulties she faced while raising her son. While her studies in China were in Russian Literature, in the United States, Amy obtained a Master’s Degree in Library Information Science.

She served the American Medical Association for over 25 years as their Clinical Medical Librarian/Director. Amy also joined the American Medical Library Association’s strategic planning committee and developed policies throughout the United States. She never stopped learning. In 2016, Amy was awarded a Master of Business Administration (MBA). She loved American History, Art and Literature, and also enjoyed traveling the world. In addition, Amy played the Erhu, a two-stringed bowed musical instrument or Chinese violin, in her younger years, and understood and appreciated music.

In December of 2017, Amy was diagnosed with ALS. As a Christian, she had a big heart, and always loved people and helping people in need. Amy looked for a way to leave a legacy to support research and help people living with ALS who experience challenges from this devastating disease. Through her estate plans, Amy created a fund benefiting the mission of ALS Network that accomplished all of her goals.

Sadly, Amy passed away in March 2020. She is survived by her son, her father, and her two sisters. She is laid to rest in Temecula, the city that she loved. Her legacy of caring and compassion lives on through her generous and thoughtful estate gift.

Christopher: A Beautiful Life

Christopher Noel Ryan was born in the former British colony of Jesselton, North Borneo (now known as Kota Kinabalu, Sabah, East Malaysia) in December 1958. He was the fifth among seven siblings, having three sisters and three brothers. His early education was in Sabah and later in Bangalore, India where he got his first degree. He eventually returned to Malaysia.

He taught mathematics for a few years at a private college in Kuala Lumpur before going to the US in 1988 to continue his studies focusing on computer science. After attaining his post-graduate degree, he worked in Illinois, Nevada, and California over the following decades as a computer engineer, achieving his goals with characteristic determination and hard work. Christopher loved living in California. He bought a house in Santa Cruz which became his home.

Christopher loved travel, meeting peole, adventure, sports, and outdoor activities. His absolute passion was running daily, which he did with much joy and determination in the beautiful area around his home in Santa Cruz. Forever challenging himself, he took pilot training and learned to fly, para-glide and scuba dive.

Family, friendship, honesty, and integrity were important things to him throughout his life. Christopher was thoughtful and generous and he went out of his way to help his family, friends, and strangers. He unceasingly supported the people of whom he knew they were in need, his student friends in Carbondale, his friends in the Bay Area and, of course, his family. Even in his last wishes he thought of being helpful to others.

In 2018-2019 Christopher discovered he was suffering from ALS and began utilizing the Care Services with ALS Network. With his typical curiosity about all things in life, he systematically researched the available science behind the disease. He pragmatically and methodically organized his life around this new reality, informing all of us about the diagnosis and making plans for the remaining years of his life.

Christopher was very much attached to the US which had become home to him; however, while he was still able to walk, he wished to pay a last visit to his hometown, Kota Kinabalu, and to spend time with his family there. With some trepidation and with great courage he set out from Santa Cruz in mid-2021. His condition deteriorated during this time, and he died in his hometown on 13 December 2022, three days before what would have been his 64th birthday. Christopher was true to himself and lived his life with courage and dignity right till the end. His legacy to us, his family, is one of compassion, kindness, empathy, and hard work.