Left to right, Dr. Merit Cudkowicz stands with Roger and Darlene Long at the Walk of Hope in Plattsburgh. The Raising Hope Golf Tournament is July 28.
Dr. Merit Cudkowicz, chief of the department of neurology at MassGeneral, thinks a cure for ALS is near.
Now is the time to invest in neuroscience, she said.
“We are very, very close.”
She joined more than 700 more people from the North Country and beyond who raised more than $100,000 for the ALS Raising Hope Foundation at the inaugural Walk of Hope, Walk of 1,000 Umbrellas and Spring Festival. Participants donned blue shirts and carried white and blue umbrellas for the walk that started at Trinity Park. The event was held to raise awareness and help find a cure for degenerative neurological disorders such as Alzheimer’s, Parkinson’s, Huntington’s disease, Lewy body dementia and ALSO, also known as Lou Gehrig’s disease.
Roger and Darlene Long of Peru started the foundation.
Mr. Long was diagnosed with ALS after losing his coordination in 2009 and growing weaker as doctors worked to discover why he was facing such difficulties.
Today, he can only talk and move a few fingers, but his spirits are high as he fights to raise awareness and money and help others struggling with degenerative neurological disorders.
“It’s overwhelming, humbling and comforting,” Mrs. Long said of the turnout at Trinity Park event, which also featured, entertainment, food and services such as massages and more. “I think all of us who lost someone to one of these diseases feels a sense of unity and community. This just reaffirms the wonderful community we live in.”
Mrs. Long said the money raised will go toward research pertaining to all such diseases.
“Together we can make a difference.”
For her part, Cudkowicz said some of the money raised provides funds to conduct high risk studies that should provide breakthroughs.
“This gives me the shivers,” she said, standing near Mr. Long. “This is America here. This is the community coming out.”
Assemblywoman Janet Duprey stressed the importance of raising money and awareness of ALS and related diseases. Roger and Darlene are true inspirations, she said.
She and others also pointed out the high number of cases found in the North Country and the connection to living near the water.
Stephanie Desautels’ father Richard was diagnosed with Parkinson’s disease four years ago. She helped organize the Plattsburgh Half Marathon, which raises money to help battle Parkinson’s and was on hand to help at the Walk of Hope.
Behind Desautels, a field of balloons blew in the wind, each one representing someone who was lost to a neurodegenerative neurological disorder.
“We are walking in memory of a close friend of ours,” said Victoria Felio of Peru. “If he were still here he would want us to walk for his uncle, Roger Long.”