Nov 14, 2014 at 11:49 AM

Beyond Stephen Hawking & the ALSIceBucketChallenge: My Journey with Jon

By Karen Kang

This is a reblog of a blog created on November 13, 2014 by Karen Kang published in her website: Thanks, Karen, for sharing this with us!

ALS Ice Bucket Challenge

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).

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

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.

My 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.

Living with ALS 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 (MND) 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

My 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.

Posted in Living With ALS.

Nov 13, 2014 Arrow1 Down Reply
Karen Kang

Thanks so much for reblogging this. I have heard from many friends and strangers who were moved to donate to fund ALS research at ALSTDI. With so much love and goodness in the world, we can overcome ALS!

Nov 13, 2014 Arrow1 Down Reply

@Karen Kang: Our pleasure. We agree that, together, we will overcome this. Hope is higher than ever that solutions will be found.

Nov 14, 2014 Arrow1 Down Reply
Jess Rabourn

Karen, I just read your message about you and Jon. After being in the ALS space for the last five years, I still find it amazing what quality of people I meet who've been struck with this disease. You sound like people I would love to know.

I want let you know about an ALS non-profit company that was started by patients and family three years ago to complement the great research done by TDI and other facilities. You see, even if a cure was discovered in a lab today, it would still take months to years to get that compound into clinical trials, then another several years -if lucky- for the drug to get approved. Not everyone realizes this. And of course, current ALS sufferers don't have years to wait. The company I'm talking about, ALS Emergency Treatment Fund, was built to sponsor FDA-authorized access programs that give all patients (not just the few who can enter clinical trials) the chance to explore these medicines before they are approved. Though it would take many years to get a cure through FDA approval, patients can find hope in knowing that we can provide access to exploratory drugs in the meantime. ALS Emergency Treatment Fund is not as widely known as it should be and did not receive much from the Ice Bucket Challenge, but it is moving forward. I can tell you more if interested. -Jess

Nov 17, 2014 Arrow1 Down Reply
Karen Kang

@Jess Rabourn: Thanks for making me aware of the ALS Emergency Treatment Fund. I went to your website at and am interested in learning more. We live in the SF Bay Area if you'd like chat sometime.--Karen