Ice Bucket Challenge Progress

 

 

Spotlight On ... Jon Huntley
Pockets of Joy

  GWC_2018_huntley_family  
 

Second from left, Jon Huntley pictured with his family.

 

May 9, 2018 - Los Angeles, California

Jon Huntley is a man of fierce determination and perseverance in his pursuit of a joy-filled life. Although his childhood memories are filled with separation and uncertainty, instead of allowing these painful memories to make him bitter, he used them to give his life a more meaningful purpose. In his recently completed memoir, Pockets of Joy, detailing his life and his battle with ALS, Jon writes, “Joy gives our lives purpose. Joy is not perfect but it fills you with warmth and pride for what you do at that moment in time. Sadly people often choose to see the storm over the fun of dancing in the rain.”

Huntley earned his Bachelors of Administration in Accounting and Masters in Arts & Cinema from University of Southern California (USC) and he embodies the “Fight On” spirit of his alma mater. Although it was his dream to become a screenwriter, after several years of pursuit, he used his other talents to support his family, eventually becoming the CFO and board member of the successful technology company, FutureLogic.

Jon was finally living a joy-filled life with the love of his life Rebecca and their two daughters, Olivia and Rachel when, in September of 2012 at just 45 years old, Jon was diagnosed with ALS.

  GWC_2018_JonHuntley_1  
 

Jon Huntley pictured at the 2013 Los Angeles County Walk to Defeat ALS.

 

As Jon’s ALS progressed, he lost his ability to drive, to speak, to walk, rendering him unable to participate in activities he cherished such as coaching Rachel’s soccer team and his career. When his care became too demanding for Rebecca, he had to move to a full time nursing facility. Jon found ways to fill those losses with joy. He feels joy that he has been able to receive quality care at the Motion Picture and Television Fund Long Term Care facility, and treasures the time with his family even more. In addition to Pockets of Joy, Jon retained his creative spirit by writing and directing a documentary, titled Face ALS, with the help of USC friend, Julia Swift, and her husband, Andrew.  

Jon also truly enjoys editing shows for channel 22 at MPTF.  To date, he has edited four projects.   Jon can edit movies with a device that tracks his eye movement called Eye Gaze.  When Jen Clymer, Producer, asked Jon to write or direct a project he got excited.  Jon decided to write a screenplay entitled MATT & MAYA, which is inspired by his relationship with an amazing couple he got to know at the MPTF Long Term Care Unit.  He wanted to share their friendship and visualize the experience of living in a long term care facility.  Jon will also edit the short film.

Jon, with his family and posse of friends, have become tireless advocates for treatments and cures. Since Jon’s diagnosis in 2012, their Walk team, “The Happy Huntleys,” has raised over $220,000 in the fight against ALS and has been repeatedly celebrated as one of the Top Fundraising teams in the country.  

  GWC_2018_ALS207  
 

Jon Huntley with members of the Happy Huntleys Walk to Defeat ALS team, and the USC Trojans marching band. 

 

Because of his amazing efforts, The ALS Association Golden West Chapter presented Jon with the 2016 Walk to Defeat ALS Hero Award. While he’s unable to speak, Jon continues to raise his voice by spreading ALS awareness and living his life to the fullest. “ALS may be quickly robbing me of many things but it won't take my strength to ‘Fight On’ and share my journey with a disease we should find a cure for,” states Huntley.

  GWC_2018_JonHuntley_2  
 

The Happy Huntleys Walk to Defeat ALS team at the starting line in 2013.

 

To join and support Jon and The Happy Huntleys in the 2018 LA Walk to Defeat ALS, please visit their team page: http://web.alsa.org/goto/HappyHuntleys. To read more about Jon, download Pockets of Joy here, and to view his series of Face ALS videos, head to YouTube and the Happy Huntleys channel.