My precious son, Ryan Farnsworth, was diagnosed with ALS in 2015, at the age of 29.
This information came only after numerous doctor visits and medical tests, trying to understand why he had uncontrollable muscle spasms throughout his body along with growing weakness in his hands. Ryan was told that he had a disease that has no cure. He learned that he had two to five years left to live, and that his body will slowly shut down, with no treatment to improve function.
On top of this, Ryan was told there was only one medication to lengthen his life by 30 days. I will never forget when we got THAT news! On top of this, Ryan was told there was only one medication to lengthen his life by 30 days. I will never forget when we got THAT news! My heart still breaks thinking he had to go through this, and that there are so many people that are still receiving this same news every day, along with those who have to live with this horrible disease.
I had NO idea what ALS was or how to help him. The Golden West Chapter supported our whole family throughout Ryan’s journey with ALS. The Chapter’s free-of-charge care service programs and support groups literally saved me. Our family and friends also decided to raise ALS awareness and support as “Team Ryan” at many Walk to Defeat ALS events.
This community empowered and became a part of us. Together, we surprised my son on his 30th birthday, when hundreds of people sang to him at the Napa Valley Ride to Defeat ALS and Walk. Then, it was Ryan who turned the tables on my birthday at the San Francisco Giants ALS Awareness Day, during a home plate ceremony with over 40,000 people cheering. It was these connections that inspired Ryan, and gave him the platform to be heard.
With his college degree in communication, coupled with the support of these amazing new friends, Ryan began to blossom. He began to share his feelings and personal reflections through creative pursuits, like his blog, YouTube Channel, website www.alswellness.com and other social media channels. He was also able to publish a book of poetry, "Seeds of Light Sown," and dedicated the proceeds to support the mission of the Golden West Chapter.
By January 2019, the disease began to progress quickly. Ryan decided to give his limited time left to raise ALS awareness and support and to empower others through the Voice Your Love awareness campaign. He spoke about how ALS changed his life and his reflections about the importance of love. On February 19, 2019 - the same day his story was shared with the world - Ryan died at the age of 32.
Ryan had finished writing his second book shortly before he passed, “Insights to Light The Way, Lessons From Life and ALS About Living Well,” which we published in 2020. Here is one of my favorite sections:
“You may not see your power just yet, but I do.
You are powerful, forged by a challenge that has broken you apart only to show you the truth that lies underneath the shattered pieces of a story no longer needed.
We have all suffered under the tyranny of minds that criticize and overemphasize our perceived faults, seeing all of our glorious progress as never quite good enough.
Dare yourself to love the truth of who you are.
Thank it for showing you who you are not, so that you could remember who you are,
You may not see your power just yet, but I do.”
It has been three years since Ryan’s death, and I have reflected so much on his journey of ALS. The Golden West Chapter is absolutely committed to caring for those with ALS along with supporting their floved ones and friends.
Our own family continues to be involved in advancing the search for effective treatments and cures, and are starting our planning now for our 2022 Community Outreach participation. There are so many people who need help now and also those not diagnosed yet will need the same support we received from the Chapter.
Every day, I think of my son, always with his sweet smile, and the many gifts he gave. His positive mindset still inspires us with messages of living with gratitude and appreciation, and of how to love yourself. Ryan’s passion was to connect people to the power of within themselves, and I can feel him urging me on with this mission.
In honor of Ryan and all those who are affected by ALS, please voice your love today!
Please join us and #VoiceYourLove today!
We thank the many people who have participated and shared their stories in
We thank the many people who have participated and shared their stories in support of this special ALS awareness campaign through the years, including our deepest gratitude to Ryan and his family for their willingness to share their stories.
Watch this video to learn more.