Putting one foot in front of the other has never been so difficult for Bert de Vries. The 53-year-old is slowly losing his independence to ALS or Lou Gehrig’s disease.
“I noticed some weakness in my right hand and it took a while for me to admit that to myself,” de Vries said.
At the time he was diagnosed de Vries was a renowned ear, nose and throat surgeon in New York, he made his living with his hands.
“I was doing my best to negotiate, argue and deny what was really happening,” de Vries said.
Three years later de Vries has come to terms with his mortality. Even so, it’s rare to see de Vrieswithout a smile on his face. One thing that really has him laughing – the Ice Bucket Challenge. From celebrities to your friends to President Bush – everyone is getting drenched.
“People who weren’t aware of this disease who never thought to open their checkbooks for ALS research. I’m excited they’ll take that money and pour it into the labs and the brain power,” de Vries said.
The national ALS Foundation saw more than $90 million donated in less than 30 days – thanks to the challenge. That’s more than the organization typically raises in three years.
“It’s tremendous progress, it’s a groundswell, like a tsunami of results,” said Kevin Packman.
It’s trickling down to local groups. Kevin Packman chairs the ALS Recovery Fund in Miami. He said the challenge prompted $20,000 worth of donations for his group in just four days.
“Whether people are dumping water because everyone is doing it or to support the organization, it doesn’t matter. Money is being raised and that’s the key at the end of the day,” Packman said.
As promising as the numbers are, reality for Bert and his wife Christine is still frightening.
“The last couple months we’ve had to transition Bert into the wheelchair and it’s been difficult watching him go from walking along side me, to in a motorized wheelchair alongside me. Emotionally it was a month full of crying and tears for me,” Christine de Vries said.
But the new reality also opens the door for discovery.
“The idea that there’s going to be a breakthrough and slow this disease is in the realm of possibility, it’ll just require funding for good research,” de Vries said.
