Running up 42 flights of stairs will make pretty much anyone out of breath, but for those living with cystic fibrosis, experiencing that tightness in the lungs is just part of a normal day.
That’s why for the past 24 years, thousands of people have joined with the Cystic Fibrosis Foundation of Northeastern New York to run up the 809 steps at the Empire State Plaza’s Corning Tower to raise money to fight the disease and spread awareness of it.
“It is a challenge,” Cystic Fibrosis Foundation Executive Director Donna Clark said. “When you reach the top … you have the feeling similar to what it feels like to have CF. It’s taxing on your lungs to be that high up.”
Cystic fibrosis is a genetic disease that causes a thick, sticky mucus to build up in the lungs and the pancreas, which eventually infects the lungs. People with cystic fibrosis live to an average of 38 years old, Clark said.
This Thursday, March 7, from 6 to 9 p.m., marks the 25th anniversary of the annual Stair Climb at the Plaza, which is the oldest CF stair climb in the country. It has drawn about 200 participants each year, who over 24 years who have climbed a more than 3.8 million steps combined and raised almost $1 million to help fund research to find a cure for CF.
Climbers include individuals, relay teams and firefighters in head-to-toe firefighting gear. Participants pay a flat fee and then must raise a minimum of $125 for the run by signing up sponsors. Money from the event goes to supporting the CF Care Center at Albany Medical Center, which is the only CF care facility in the Northeast between Montreal and Westchester County.
“Our mission is to fund the science that will bring us new drugs to cure the disease,” Clark said. “Last year, Kalydeco (became the) first drug of its type that corrects the problem at the cell, which is earthmoving for people with CF. However, there are so many mutations of CF, this drug only affects 4 percent of people with CF. (But) 4 percent of people with CF have a new life because of this drug.”
Vertex Pharmaceuticals, Inc., recently announced its initiation of international Phase 3 clinical trials of Kalydeco in combination with VX-809, a combined CF drug designed to treat the underlying cause of people who have a certain kind of CF mutation. The CF Care Center at Albany Medical is one of the hospitals to start a six-month trial for the new drug, Clark said.
“This is groundbreaking, wonderful news,” Clark said of the new drug, which is different from other drugs because instead of just taking care of CF symptoms, it fixes the problem.
This year, Clark said they are hoping to have at least 200 participants for the Stair Climb and raise $60,000. While many people register in advance, anyone can come out the day of the event as long as they still raise the $125 within 30 days after the stair climb. All ages and levels of strength are welcome. Clark said there are many serious climbers who can run up the stairs in under five minutes, while others take about 20 to 30 minutes to walk up.
Any individual that raises $1,000 or more through their sponsors will be rewarded with two nights and three days at the High Peaks Resort in Lake Placid, from April 12-14. Medals will also be given out at the event for the fastest times, a Firefighter’s Challenge and the top overall male and female finishers.
Many climbers also either have CF or know someone with the disease. Michelle Breton, the honorary chair of the event, will take on her 18th stair climb at this year’s event. Her sister, Mary, was diagnosed with CF at 2 years old and climbed the stairs herself for nine years.
“She loved school and she loved parties. We did the stair climb around her third birthday because she thought it was a party,” Breton said. “She saw all of the people, heard the music … it became her favorite event.”
Breton said even when her sister was in the hospital she was persistent in wanting to still attend the event. Although Mary died when she was 12, her family continued to take part in the stair climb each year in her memory, registering under the team name “Uno” to honor her favorite game. Since her death, the foundation has dedicated the event to Mary.
“It’s something I feel I can do for her, raising money for finding a cure, stopping the progression of CF. I don’t want to see any other family go through this,” Breton said. “Even though she is gone, I am honored to continue this and do it in her memory and say I’m doing it for her. She wouldn’t want anyone else to go through what she did.”
For register for the event, contact Clark at 783-7361 or email at [email protected]. Online registration is available at neny.cff.org/stairclimb, or in person at 4 p.m. the day of the climb.