Neil Alexander: A Story of Strength in the Face of Tragedy
PITTSBURGH, Pa., Feb. 15, 2012 – On a sunny Pittsburgh afternoon in June last year, Neil Alexander received the kind of news we all dread. The progressive muscle-twitching he had experienced for the previous 18 months was diagnosed as Amyotrophic Lateral Sclerosis (ALS), the devastating and incurable condition better known as Lou Gehrig’s disease.
During the days that followed, as Neil struggled to process his doctor’s findings, he focused on his family – his wife, Suzanne, their daughter Abby, 10, and eight-year-old son, Patrick. Concern about their security when he was gone; thoughts of his wife with whom he now knew he would not grow old, children he would not see blossom into adulthood, future grandchildren he would never know.
But then Neil, 46, transformed the crushing news of his diagnosis into a courageous rallying call for fellow sufferers of the disease. He and Suzanne established a fund at The Pittsburgh Foundation, LiveLikeLou.org, to raise public awareness about ALS, to help finance critical medical research and to provide urgently-needed support for victims and their families in Western Pennsylvania.
The fund is named for baseball legend, Lou Gehrig, to honor the example he set for all people living with ALS.
“There are still moments every day when I think I’ve been cheated, that Suzanne and I have been robbed of our future together, how the disease has taken away our plans and our hopes for our family,” said Neil.
“But I have decided not to spend my time being angry. We are all living with limited time on this earth and I am on the same journey that everyone is going to take at some point. Unlike most people, I am able to personalize my journey, and hopefully in the time I have left there is a lot we can do to help others.”
Neil and Suzanne are not alone. The support that has gathered around them from family, friends, neighbors, co-workers and volunteers resembles a small, devoted army, all committed to helping them personally and raise money for the fund. Neil’s work colleagues – he is Director of Corporate Services with leading financial management firm, Hefren-Tillotsen, Inc. – have already hosted fundraising events and more are planned.
Neil will use a special website – bearing the same name as his family’s fund, LiveLikeLou.org – to provide fundraising updates and to receive contributions. He plans to document the relentless progress of his disease with photographic and narrative journals on the site, and on March 24, Neil and Suzanne are hosting their 20th wedding anniversary party where they will renew their marriage vows. Instead of gifts, donations are requested for their fund.
“For many ALS patients and their families, this diagnosis means financial ruin,” said Neil. “The equipment, medication, home modifications, communication and transportation devices are all extremely expensive and urgently needed soon after diagnosis. Suzanne and I are fortunate because we are financially secure, and we have a strong network of family and friends willing to help us. We are grateful and want to spend this next chapter helping other ALS families who are less fortunate.”
Neil and Suzanne are very much aware of what lies before them. Most ALS patients pass away within two to five years of their diagnoses. Approximately 10 percent benefit from a remission or slow progress of the disease, extending their life expectancy to 10 years or more.
Muscle weakness and atrophy has already begun to set in with Neil’s hands – one of the defining symptoms for his neurologist, Dr. David Lacomis when he delivered his diagnosis at UPMC’s Presbytarian Hospital on that beautiful summer afternoon on June 29 last year.
There is no medical treatment that can halt the slow march of the disease, and none that will offer a cure. “When I received the news, it was like the air being sucked out of the room,” said Neil. “I asked Dr. Lacomis: ‘What do people do now?’ He told me: ‘Do what you love.’ It was a pretty damning response.”
Currently, Neil continues to work and to live the life he always has. This summer he and Suzanne are having an addition built on to their home in O’Hara Township, designed to meet his future needs and those of his family and friends who will be helping him. The time will come when he needs assistance to eat and dress, when his speech will be affected, and when he will need a wheelchair.
“I hope my ALS has a slow progression,” he said. “But we are not going to hide from it. I will still go to my children’s school events in a wheelchair, and when I’m not using it I want the kids to have fun riding it down the street. I want them to look back and laugh with their children about how their grandfather dealt with such a tough diagnosis. It helps to take away the negative power of our situation.”
The mission that Neil and Suzanne have set for themselves – to raise money for research into ALS and to find a cure – at times seems daunting. The disease was first identified in 1874, and since then, little scientific progress has been achieved, even though more than 5,000 individuals are diagnosed with ALS each year in the United States alone. A similar number die of the disease in the U.S. every year, and at any one time there are approximately 30,000 ALS sufferers.
“We want to raise awareness to push this into the foreground of attention for medical research,” said Neil. We are getting positive energy from what we are doing. This is a tough diagnosis and everyone deals with it differently. If there is any positive benefit that can come from this, then I believe LiveLikeLou.org represents that.
“We are doing it for the benefits we can create for other sufferers of ALS and their families, for the hope that renewed research may bring, but also as a vehicle for personal growth for our kids so they will know that we didn’t let this happen without a fight.”
“Neil’s is a deeply moving, tragic and courageous story,” said Grant Oliphant, The Pittsburgh Foundation’s president and CEO. “Despite the devastating news of his diagnosis, Neil and his family are resolute in their efforts to use this to help others and to advance knowledge and treatment of this dreadful disease.
“They have set a compelling example of selflessness that few of us will ever attain and I am humbled that The Pittsburgh Foundation is able to play its part as partner, friend and helper on their journey.”