On Sunday, October 20, The Happy Huntleys group from Burbank set a fundraising record for the largest amount of donations for the Golden West Chapter of the ALS Association’s Los Angeles Walk, with over $58,000 pledged before the walk began. Led and inspired by Burbank resident Jon Huntley, his family and friends, The Happy Huntleys group of about 160 people gathered together to make a bold statement in bright red T-shirts at Sunday’s event.
When Mr. Huntley was diagnosed with ALS (Amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease) about 18 months ago, the active, competitive person he was used to being was forced to readjust his perspective. ALS is a progressive, fatal neuromuscular disease, that slowly stops the body’s ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages between two to five years from the time of diagnosis.
“ALS is what researchers call an orphan disease because the drug companies see no profit in making drugs for it because the afflicted die so quickly,” Mr. Huntley wrote in a speech posted on his ALS fundraising blog. “The only research occurs because of advocacy fundraising. So I have my new annual passion project to raise awareness and funds for ALS.”
Jon and Rebecca Huntley have lived and worked in the area for 22 years, living in Burbank for the past 14. Their oldest daughter, Olivia, is a seventh grader at John Muir Middle School and their youngest, Rachel, is a fifth grader at Emerson Elementary. Mrs. Huntley works for Dreamworks Animation. Mr. Huntley worked at FutureLogic until last year, and coached and refereed AYSO soccer for four years. When Mr. Huntley was diagnosed with ALS, he didn’t quit coaching, his 2012 GU10 (Girls Under 10) Team “Face My Fury” played in the championship and the AYSO Region named him “Volunteer of the Year.” He continued as assistant coach for the GU10 All Star team, until he stepped down in March 2013.
Mr. Huntley’s ALS has progressed to the point where he requires a wheelchair to get around. He writes emails typing one letter at a time, with two fingers. A short email can take 30 minutes to write.
“I started my new role as ALS activist in April 2013 when I created ‘The Happy Huntleys’ Facebook page to inform friends and family about the progression of my ALS,” explained Mr. Huntley. “In May, inspired by the AYSO GU10 All Stars who named their Burbank Cartoon Classic teams after me – Jon’s Angels and Huntley’s Heroes – I created sponsor levels and recruited corporate sponsors for ‘The Happy Huntleys.’ I was overwhelmed when the following business relationships stepped up…”
Mr. Huntley’s former employer, FutureLogic, Inc., donated $2,500, joining the Jon’s Angels sponsor level. With donations of $1,000, AML Group, Cushman Wakefield, Future Electronics, Merrill Lynch, O’Melveny & Myers and Brian and Marianne Ring supported the effort as Huntley’s Heroes sponsors.
Through family, friends, emails, Facebook and LinkedIn, Mr. Huntley initially started fundraising towards a goal of $20,000, which was surpassed in early September. “Then, I was hoping for $30,000, which my team leader and ALS contact thought was very doubtful,” recounted Mr. Huntley. “So, I increased my updates on Facebook, my emails and my LinkedIn messages. Then I wrote an email to an old entertainment friend who did not realize how severe ALS affects and kills those who have it. The email made me realize most people did not know/understand what I was going through.”
So, Mr. Huntley emailed and posted online a message describing the ways his life has changed since his diagnosis. He has a hard time walking and talking and uses a motorized wheelchair to move around his home.
“In the last three weeks, we raised over $33,000, including a $500 donation from Burbank First United Methodist Church, over $3,000 from Burbank AYSO families and $6,000 in the last 24 hours of the Top Fundraising Team Competition,” commented Mr. Huntley. “The last two days, I sent thousands of emails and messages to those who had not contributed. I learned people cared but they were busy with their own lives, so I had to push and encourage.”
“I also learned that people you think wouldn’t give sometimes give the most. Most importantly, I learned that more people know someone who has ALS or has died from ALS than anyone realizes. I truly enjoy doing all this but it’s not without pain and guilt… it’s really hard typing or creating artwork with essentially two fingers. Also, I cried many, many tears worrying that I might lose friends or upset people by pushing so hard… truly mixed emotions.”
Final numbers aren’t in yet, but the group knows they’ve raised a record-setting $56,910, and possibly over $58,000 including unconfirmed donation commitments. “We exceeded any conception of what I thought we could raise,” Mr. Huntley acknowledged. “It’s a credit to the loving and generous spirit of my friends. I applaud and thank them.”
“The ALS community is grateful to Jon and his family, as well as their team ‘The Happy Huntleys’ for their exceptional determination and dedication in the fight to defeat ALS,” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter. “While there has been significant progress in research in recent years, people with ALS and their loved ones still have far more questions than answers. The groundbreaking work of scientists today continues to inspire confidence that there will soon be greater advancements in understanding the causes of the disease, developing new treatments and ultimately finding a cure.”
At the post-walk celebration, Mr. Huntley and The Happy Huntleys danced the Time Warp from The Rocky Horror Picture Show. Because Mr. Huntley can no longer speak clearly, daughter Olivia read his speech to the crowd. Video from celebration can be seen on YouTube at the following link.
About 2000 people participated in this year’s ALS Association Golden West Chapter, L.A. Walk. The Happy Huntleys raised the most money for ALS research in the 12 year history of the event. To date, the 2013 L.A. County Walk to Defeat ALS has raised over $340,000 and will provide critical funding for the chapter’s mission priorities in global cutting-edge research, care services and public policy initiatives.