Beyond Stephen Hawking and the #ALSIceBucketChallenge: My Journey with Jon

I saw the first Ice Bucket Challenge on Facebook only days after my husband, Jon Ferraiolo, was diagnosed with ALS, or Lou Gehrig’s Disease. ALS is a the fatal motor neuron disease that eventually robs its victims of the ability to talk and move. I followed a friend’s link to the ALS Therapy Development Institute website and immediately donated with the hope that researchers would find a cure for Jon and thousands of others with ALS (amyotrophic lateral sclerosis).

The Year of ALS

Because of the viral videos, it was suddenly cool to be talking about ALS. Celebrities from Bono to Bill Gates and Martha Stewart to Jimmy Fallon were dumping buckets of ice over their heads and challenging others to do the same and/or donate to ALS research. During one month this summer, the ALS Association raised more than $100 million, 40 times more than it had in all of 2013. Two motion pictures have been released with main characters who have ALS, including one on Stephen Hawking, the world-famous theoretical physicist and cosmologist, called “The Theory of Everything,” and one starring Hilary Swank entitled, “You’re Not You.” This is the year of ALS.

2014-01-26 08.51.45My husband jokingly said of the attention on ALS, “How nice for everyone to be doing this for me.” Despite having a disease that can progress rapidly in cruel fashion, he remains positive with his characteristic sense of humor. He made me watch “The Big Lebowski” and declared that he would like a send-off like Donny’s in the movie (a beachfront spreading of ashes, but minus the ashes in the face).

Soon after my husband’s ALS diagnosis, he and I met our three grown daughters and some dear family friends in San Diego. Everyone was devastated by our news.

Live Life to its fullest
We believe in living life to its fullest, which you can’t do if you live in a constant state of depression and grief. Yes, it is OK to cry and feel sad, but then you need to look around you and appreciate the love and beauty that exists in the world. For us, family and friends were the perfect place to start. We attended an August birthday party for a wonderful friend and declared that there were to be no long faces as we were here to celebrate. (For ourselves, Jon and I took a nearly three-week nostalgia and new memories tour of France in September. We met there as college students.)

The day after the birthday party, we decided to make a difference as a family and made an Ice Bucket Challenge video that was quickly met by our friends’ videos. We are still learning of other friends who are making #ALS Ice Bucket Challenge videos and donating in Jon’s name. This is social media at its best–when real lives are affected for the better through sharing.

 

Brand Perceptions of the Physically Challenged
Jon has not let his speech problems from ALS stop him from meeting new people or telling jokes with our family. He is the same positive, caring guy with a brilliant mind–the software developer best known as the father of Scalable Vector Graphics (SVG) that made the graphical web experience a lot better. Only now his body is failing him. Those that don’t know him will see him in a much different light when he is confined to a wheelchair and when he has to communicate with a computerized voice. For now, it is only his slow and slurred speech that have some looking askance–he can sound inebriated when he has had no alcohol.

Motor neuron disease patients everywhere are silently branded by their disabilities as opposed to what they contribute to life–Stephen Hawking notwithstanding. One ALS widow told me of the unkind stares and whispers her husband received when she would take him out in public propped up in his wheelchair. He still had his mind intact, but he was frozen in a useless body that required a feeding tube and breathing apparatus.

Long after the Ice Bucket Challenges cease, ALS will still be here. There is no cure and only one FDA-approved drug with significant side effects that can lengthen an ALS patient’s life by a couple of months or so. In my small circle of friends, I know of at least a half-dozen people who have had ALS. Unfortunately I’m using the past tense because those with ALS typically live only 2-5 years after their diagnosis.

My holiday wish
2014-08-23 17.12.24 copyMy holiday wish is that ALS awareness and research funding continue to grow so rapidly that my husband, the loving father and funny friend to so many, is cured.

You can make a difference by helping others learn about the disease, and by contributing to the superbly run nonprofit organization for biotech ALS research, ALS Therapy Development Institute (ALS-TDI).

I would love for you to make your donation in honor of Jon Ferraiolo, my husband and best friend. Let’s leverage the good from the #ALSIceBucketChallenge and make finding a cure not a fad but a reality.

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4 Responses to Beyond Stephen Hawking and the #ALSIceBucketChallenge: My Journey with Jon

  1. Adam H says:

    This is the first I heard of this news. Thank you for sharing Karen. God bless you and your family. I just sent my donation on behalf of John.

  2. Karen Kang says:

    Adam, I felt compelled to educate the world about ALS. Thank you so much for your support and kind thoughts.

  3. Matt Podoll says:

    Hi Karen, this was a great read, thank you. You were a speaker to our 2013 class of LPA. I remember your presentation at Palo Alto University, it was excellent. My friends grandfather has ALS and has been going to the VA for treatment. I believe they are putting him on the medication you mentioned. I spent some time with him a couple nights ago and he told me stories of his teens in the 40’s serving in the navy and painting ships etc and meeting his wife. He does talk slow and slurred but his eyes are pointed and direct. He was telling me the lead and another compound in the paint (chromium something i think) could have contributed or caused him getting ALS.

  4. Karen Kang says:

    Matt, sorry to hear about your friend’s grandfather. We can’t think of anything that might have contributed to Jon’s getting ALS–maybe all those countless hours in front of CRTs and computer screens as a programmer. Thanks for your kind words about my Leadership Palo Alto presentation. Hope all is well.