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#VoiceYourLove Spotlight: Ryan Farnsworth

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Ryan Farnsworth was diagnosed with ALS in 2015 at the age of 29. Throughout his journey with the disease, Ryan continued his work as a writer, poet, and inspirational speaker. He shared his personal reflections as a person with ALS through his blog/YouTube Channel and through his book of poetry, “Seeds of Light Sown.” In early January 2019, even though his disease was progressing quickly, he decided to give his time to the #VoiceYourLove campaign to raise ALS awareness and share his own thoughts about the importance of love.

As active ambassadors of the Golden West Chapter’s mission, Ryan and his family selflessly agreed to be filmed for the campaign on January 17, 2019. Although his health declined rapidly over the next few weeks, Ryan was able to see all of the materials we created for his profile, including a short film about living with ALS with his family. Sadly, on the evening of February 19, 2019 – the day we shared his “Voice Your Love” story with the world – Ryan Farnsworth died at the age of 32, surrounded by his loving family.

In the years following his death, Ryan’s life and message of love continues to be an inspiration to our ALS community. His book of poetry was featured as a part of the Young Professionals Group’s annual “Screw ALS” art show and wine tasting event, and, through some extra footage from the #VoiceYourLove filming, attendees were able to experience Ryan reading his poems.

Ryan was working on a second book that he asked his family to complete for him. “Insights to Light the Way: Lessons From Life and ALS About Living Well,” was in September 2020, and is a genuinely beautiful must-read of Ryan’s experience and realizations from life and living with ALS.

His immediate and extended family– including his mother and stepfather, Trish and Bob Rice, sister, Laura Pascua, brother, Jeff Pascua, and aunts, Brenda Roncarati, Diane Gregson, and Ruby Cohan– have continued their dedicated efforts to raise awareness and support. Ryan’s cousin, Connor Cohan, created an unique annual fundraising event called, “Eat to Defeat ALS.” Laura has also served as an ALS advocate and also volunteered with our community partner, Hope Loves Company. Trish has also served the Chapter as a volunteer

Team Ryan continues to have a significant presence at many Golden West Chapter Walk to Defeat ALS events and at the Napa Valley Ride to Defeat ALS. We are grateful to Ryan Farnsworth and his loved ones for their continued commitment to raise awareness and support. 

Below is Ryan’s original letter to the ALS community, as a part of the #VoiceYourLove campaign.

Please #VoiceYourLove for the People Who Matter Most

By Ryan Farnsworth
Diagnosed with ALS in 2015

Like many people, I used to think of myself as a sum of many integrated experiences, interests, and relationships. I’m a son, a brother, a nephew, and a friend. I am a writer, a poet, and an inspirational speaker. I am a lover of nature and meditation, a singer of songs, and a student of the world. I am also a person living with ALS.

I was diagnosed with ALS in 2015 at the age of 29. Since that time, I have been on quite a personal journey. The physical limitations of living with the disease are challenging. But, in my opinion, it is the emotional and mental components that are the true tests. After grappling with the reality of this diagnosis, I realized that I had two options: I could either give in to worry and fear, or I could focus instead on the good that this experience has to offer me. This meant shifting my perspective from what I am losing to all that I am gaining from this change in my physical wellness.

It is amazing to me how experiences seem to move in cycles, expanding and contracting like drawing breath, to give us the learning that we need for our growth. I can truly say that I more fully enjoy my life now than I ever did when I had full function. At times, I am filled with fear and doubt for the future. But I have also found that there is something else within me, like a light behind the clouds. If that light were to speak it would say: “Do not despair, and do not lose hope. This life is good and worth living.”

I learned to love my body in an entirely new way. By having compassion for my physical self and the changes that were happening, it was a great personal relief. A desire to be of service to others blossomed within me, especially for those that have been affected by ALS. My family and I decided to get involved with The ALS Association Golden West Chapter, and participated in support at many Walk to Defeat ALS and Ride to Defeat ALS events. There is something so powerful about connecting with others going through this challenge. Even though the daily experience can feel quite hard for many of us, there is such power in coming together and being there for one another. I am inspired to see the strength of such beautiful people who, like me, are learning to find enjoyment of life even while facing such incredible adversity. And I am very grateful for everyone who is a part of “Team Ryan” in support of our ALS community.

I have also participated as a guest speaker and contributor at many other Golden West Chapter activities including support groups, community outreach events like the Champions for Care and a Cure and the Young Professionals Group’s “Screw ALS: Wine Tasting and Art Show”,  ALS Awareness Day with the San Francisco Giants, and with Chapter Community Partners, Cytokinetics for various ALS awareness events, like “ALS Adds…” and with Hope Loves Company for their Camp HLC in California.

They say that evolution is driven by necessity. The intense challenge of living with ALS is a fire that has forged me into a far better version of myself. But I do not consider that I am battling against ALS. It is unhelpful to me to frame it this way, and frankly it is not a fair fight. And if I thought of it this way, I would be measuring myself as failing as the disease progresses. I decided that I needed to love my body and myself as I am.

I have grown to understand that, as tough as this experience is, it does not have the power to limit the amount of joy, love, peace and gratitude that I can feel. I have learned to see the incredible beauty that surrounds me, especially in the faces of my family and friends. The biggest gift for me from this experience is that I have been able to connect so deeply with others, and can see them for who they are. And the love that I have experienced while living with ALS is beyond description.

To me, love is the recognition of oneness between people. Love is a breaking down of the barriers that cause us to feel separate from one another so that we can connect more deeply. To love another person is to see who they really are, as more than body, mind, or personality, more than their quirks, perceived faults and flaws. To love is to embrace one another as beautiful and unique expressions of the life expressing itself through each of us.

So I want to take this opportunity to express my love for all of you in our ALS community. It is a pleasure to be with you on this journey, and I hope that you all will #VoiceYourLove for the people that matter most in your life.

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