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In hopes for a cure
From the bottom of the world, in one of the most desolate places on earth, Steve Kendra along with the help of his two childhood friends run to raise money and awareness for neurofibromatosis, a disease that Kendra’s daughter is battling.
The extent to which parents will go to in order to ensure their child’s safety, well being and overall happiness is astonishing.
The lengths friends will go to support each other is heartwarming.
This is a story of both.
Steve Kendra was in Boston last month on a business trip. Walking up Heartbreak Hill while shouting encouragements to runners passing by, it might not seem like a business trip, but he was definitely working. The 51-year old Hilltown native was coaching runners on the NF Endurance Team— NF Endurance is a nonprofit organization located in Sellersville that is a fundraising support arm of the Children’s Tumor Foundation (CTF)—who were competing in the Boston Marathon.
The weather was sunny and cool, lovely conditions for the annual race, a far cry from where Kendra, NF Endurance’s executive director, was this winter—Antarctica. His job, though, remained the same: to fix his daughter.
Kendra’s daughter suffers from neurofibromatosis, a genetic disorder that affects one in 3,000 births. According to NF Endurance’s website, “the disorder causes tumors to grow on nerves anywhere in the body, including the brain and the spinal cord. It can lead to blindness, deafness, chronic pain, disfigurement, learning disabilities, bone defects or abnormalities, cardiovascular problems, cancer and a wide range of other complications.”
His daughter, now 15 and a student at Pennridge High, has had 14 surgeries thus far, to correct an 88-degree curve in her back she had when she was two and a half years old. Early in the process, he felt like he needed to do more.
“I joined the [NF Endurance] team as a father and a child with NF back in year 2000,” said Kendra. “I ran the San Diego marathon. I think I’ve done about nine or 10 marathons ever since. Almost every year I run somewhere in some race.”
The NF Endurance Team gives individuals the chance to raise money for neurofibromatosis and promote awareness about the disorder by participating in team endurance sports. Continued...
“In the year 2000 or late 2000, December, my daughter was planning for her ninth surgery. It was a very difficult one," said Kendra. "Not so difficult medically, however, she just didn’t want to go in for that particular surgery. My wife (Judy) and I had a bit of a struggle even internally trying to get her to go into the operating room. I had sort of a period where I just felt like I had to do something more because as a parent, we want to fix things, we’re programmed to fix things. I couldn’t fix this. To see my daughter go through this was just awful, an awful experience. A helpless experience.”
Two weeks after his daughter’s operation, the director at the time of the NF Endurance resigned and there was talk of folding the foundation.
“They were doing close to $300,000 back then,” said Kendra. “My brother and I had a local business here in the Souderton, Sellersville area called Precision Solutions. We were in business together for 25 years. I called him up after I heard this guy resigned. I said, ‘Would you entertain the possibility of me leaving the business and doing something new with my life?’ And he did. He’s been very graceful about it ever since and very supportive of me doing this new career path which is has been the most amazing thing.”
A career path that has him running, literally in some cases, all over the world with the NF Endurance Team to raise money for neurofibromatosis research and treatment. In 2009, NF Endurance raised $1.4 million.
Running on the moon at the bottom of the world
It was the scene out of a sci-fi movie as the small cruise ship with the Russian crew docked on King George Island, the largest of the South Shetland Islands located at the top of the continent of Antarctica.
Other than the dozens of research stations, there aren’t many signs of life on the island.
After a fairly smooth 2 ½-day voyage through the Drake Passage, the 99 anxious runners aboard—12 of which represented the NF Endurance Team— emerged from the bowels of the ship onto the barren land. Among them were Kendra and two lifelong friends: Bill Hardy and Bill Edmonds.
Hardy, 46, and Edmonds, 48, both graduated from Pennridge in 1981 while Kendra graduated from Pennridge in 1977. They all grew up within a few miles of each other in Hilltown, where Kendra still lives in his childhood home. Hardy now lives in Harleysville and runs Hardy Machine Inc. in Hatfield, while Edmonds resides in Erwinna and runs the B&G Manufacturing Company in Hatfield.
They were three friends, life long friends, ready to run, ready to fight, ready to pick each other up. But why? Why go all the way to the bottom of the world? Why fly from Miami to Buenos Aires, Argentina, and from Buenos Aires fly to Ushuaia, Tierra del Fuego, and from there travel by ship across one of the roughest patches of sea in the world? Why leave your family behind for 17 days to just run 26.2 miles? Continued...
Two weeks after his daughter’s operation, the director at the time of the NF Endurance resigned and there was talk of folding the foundation.
“They were doing close to $300,000 back then,” said Kendra. “My brother and I had a local business here in the Souderton, Sellersville area called Precision Solutions. We were in business together for 25 years. I called him up after I heard this guy resigned. I said, ‘Would you entertain the possibility of me leaving the business and doing something new with my life?’ And he did. He’s been very graceful about it ever since and very supportive of me doing this new career path which is has been the most amazing thing.”
A career path that has him running, literally in some cases, all over the world with the NF Endurance Team to raise money for neurofibromatosis research and treatment. In 2009, NF Endurance raised $1.4 million.
Running on the moon at the bottom of the world
It was the scene out of a sci-fi movie as the small cruise ship with the Russian crew docked on King George Island, the largest of the South Shetland Islands located at the top of the continent of Antarctica.
Other than the dozens of research stations, there aren’t many signs of life on the island.
After a fairly smooth 2 ½-day voyage through the Drake Passage, the 99 anxious runners aboard—12 of which represented the NF Endurance Team— emerged from the bowels of the ship onto the barren land. Among them were Kendra and two lifelong friends: Bill Hardy and Bill Edmonds.
Hardy, 46, and Edmonds, 48, both graduated from Pennridge in 1981 while Kendra graduated from Pennridge in 1977. They all grew up within a few miles of each other in Hilltown, where Kendra still lives in his childhood home. Hardy now lives in Harleysville and runs Hardy Machine Inc. in Hatfield, while Edmonds resides in Erwinna and runs the B&G Manufacturing Company in Hatfield.
They were three friends, life long friends, ready to run, ready to fight, ready to pick each other up. But why? Why go all the way to the bottom of the world? Why fly from Miami to Buenos Aires, Argentina, and from Buenos Aires fly to Ushuaia, Tierra del Fuego, and from there travel by ship across one of the roughest patches of sea in the world? Why leave your family behind for 17 days to just run 26.2 miles? Continued...
Their answers were simple.
“I got started running for myself,” explained Hardy. “A way to stay in shape. A way to curb the belly. Keep me going. Give me something to do. And as you’re running you meet these other people that are running for a cause. My good friend Steve Kendra’s daughter was born with NF, so we got to know what that was and we joined up with the team running, and as Steve committed to running the foundation we were more inspired to start running for other people. As I found out, when you do that type of thing—running for yourself is fun, but it gets boring—running for someone else is very inspiring.”
“I’m lucky to have a couple close friends that are involved in it,” said Edmonds. “Steve, obviously, made a big sacrifice for devoting his whole career for working for NF. He and my friend, Bill Hardy, are the ones that initially inspired me to get into doing this, to running and doing it for a cause. We do it to spend time with each other, to stay in shape and obviously for a cause, so we can raise money for a good cause. That’s why we signed up for it. We try and do a lot of different endurance events. I know Steve tried to get the team to do extreme and high profile events because it kind of goes along with the theme of endurance and signifies CTF and neurofibromatosis and people that have to deal with the affliction.”
“Both have rallied around [me],” said Kendra. “Life long friends of mine have rallied around my daughter and have sort of helped me out over the years.”
Throughout the whole race, Kendra had one of his daughter’s stuffed animals attached to his backpack.
“She has a pink monkey that I take and run with, that I take on most of these adventures that I go on,” said Kendra. “In Antarctica, I had sort of a camelback water supply that I was running with on and I had the pink money strapped to the back of the camelback to remind me. Sort of a metaphoric monkey on my back with NF and also sort of remind me of her and why I do what I do.”
Despite the muddy conditions, the three friends all finished the marathon, which was organized by Marathon Tours and Travel. Hardy finished first among the three. Kendra finished second and Edmonds finished five to 10 minutes behind Kendra.
“We ran mostly in mud,” said Kendra. “Anywhere between two inches in mud and I was up to my knees at some point. It took about an hour longer than I typically would run a marathon in. Maybe a little bit more than that because there were hills. There were 179 hills. Some of them, there was just no way to run up the hill. You had to walk and sometimes almost crawl to get up. The mud and the ice and snow as well, sort of slowed us up.”
The course began at the Russian research base and passed by several other stations setting the stage for a bizarre sight—marathon runners being cheered on by scientists at the bottom of the world.
Despite the mud, Kendra and company felt like they weren’t running on this earth. Continued...
“I got started running for myself,” explained Hardy. “A way to stay in shape. A way to curb the belly. Keep me going. Give me something to do. And as you’re running you meet these other people that are running for a cause. My good friend Steve Kendra’s daughter was born with NF, so we got to know what that was and we joined up with the team running, and as Steve committed to running the foundation we were more inspired to start running for other people. As I found out, when you do that type of thing—running for yourself is fun, but it gets boring—running for someone else is very inspiring.”
“I’m lucky to have a couple close friends that are involved in it,” said Edmonds. “Steve, obviously, made a big sacrifice for devoting his whole career for working for NF. He and my friend, Bill Hardy, are the ones that initially inspired me to get into doing this, to running and doing it for a cause. We do it to spend time with each other, to stay in shape and obviously for a cause, so we can raise money for a good cause. That’s why we signed up for it. We try and do a lot of different endurance events. I know Steve tried to get the team to do extreme and high profile events because it kind of goes along with the theme of endurance and signifies CTF and neurofibromatosis and people that have to deal with the affliction.”
“Both have rallied around [me],” said Kendra. “Life long friends of mine have rallied around my daughter and have sort of helped me out over the years.”
Throughout the whole race, Kendra had one of his daughter’s stuffed animals attached to his backpack.
“She has a pink monkey that I take and run with, that I take on most of these adventures that I go on,” said Kendra. “In Antarctica, I had sort of a camelback water supply that I was running with on and I had the pink money strapped to the back of the camelback to remind me. Sort of a metaphoric monkey on my back with NF and also sort of remind me of her and why I do what I do.”
Despite the muddy conditions, the three friends all finished the marathon, which was organized by Marathon Tours and Travel. Hardy finished first among the three. Kendra finished second and Edmonds finished five to 10 minutes behind Kendra.
“We ran mostly in mud,” said Kendra. “Anywhere between two inches in mud and I was up to my knees at some point. It took about an hour longer than I typically would run a marathon in. Maybe a little bit more than that because there were hills. There were 179 hills. Some of them, there was just no way to run up the hill. You had to walk and sometimes almost crawl to get up. The mud and the ice and snow as well, sort of slowed us up.”
The course began at the Russian research base and passed by several other stations setting the stage for a bizarre sight—marathon runners being cheered on by scientists at the bottom of the world.
Despite the mud, Kendra and company felt like they weren’t running on this earth. Continued...
“I really felt like I was running on the moon,” said Kendra. “There was no life. There was some moss on the ground, but there was no trees, bushes, nothing. Just ice, snow, rock, mud.”
Edmonds echoed Kendra’s thoughts.
“I don’t know if anything really surprised me other than just how empty and desolate it really is,” said Edmonds. “It’s just foreboding. You’re in that ship, you go up to that coast, you’re just looking at this rock and ice and icebergs. This whole place just seemed so foreboding and challenging that you learn something about these explorers.”
While mud was forecasted, Hardy mostly trained for the cold weather in the months leading up to the race.
“I did all of my training outside,” said Hardy. “It was the best winter that we could have had to train for this run. All the snow we had, the cold weather, the wind. I was out in all of it. It was great for training and preparing for clothing to wear because you don’t know what the weather is going to be if you don’t run in it. If you don’t have a clue you end up putting on too much clothes or not enough clothes.”
A day after the marathon, the locals had a chance to see more of the island, including penguins, whales, seals and albatross. Those who wanted had a chance to jump into the water.
“The scenery as you went on down the Antarctica peninsula was just spectacular,” said Kendra. “Huge mountains. I had no idea that Antarctica had such huge mountains –10,000-foot mountains. Just towered up above us. It felt a little bit like the scenery in the Lord of the Rings at some points where we’re going through these huge caverns and glaciers all over. It really felt like a dreams at time for sure.”
The marathon in Antarctica pulled in roughly $235,000.
“That was a big accomplishment for our effort which is funding research for NF and enabling treatments,” said Kendra, whose team competes in 51 events around the country and has a rock star-like schedule this summer. “It was definitely one of our more successful fundraising events.”
But don’t think that Kendra and his team are resting any time soon. They’re ultimate goal is to run a marathon on every continent. So far, the team, which has had about 6,500 members over the organization’s existence, has checked Antarctica, North America, Europe and Australia off its list. In 2012, the NF Endurance Team is going to Africa and Kendra said there is talk of planning a trip to China to run in the Great Wall Marathon.
Along with marathons, the NF Endurance Team has competed in a number cycling races, including the Race Across America, which Kendra, Hardy and Edmonds have done twice.
“Who knows what’s next on the agenda,” said Edmonds. “No doubt I’ll be getting a call one of these days and it will be something else.”
Edmonds echoed Kendra’s thoughts.
“I don’t know if anything really surprised me other than just how empty and desolate it really is,” said Edmonds. “It’s just foreboding. You’re in that ship, you go up to that coast, you’re just looking at this rock and ice and icebergs. This whole place just seemed so foreboding and challenging that you learn something about these explorers.”
While mud was forecasted, Hardy mostly trained for the cold weather in the months leading up to the race.
“I did all of my training outside,” said Hardy. “It was the best winter that we could have had to train for this run. All the snow we had, the cold weather, the wind. I was out in all of it. It was great for training and preparing for clothing to wear because you don’t know what the weather is going to be if you don’t run in it. If you don’t have a clue you end up putting on too much clothes or not enough clothes.”
A day after the marathon, the locals had a chance to see more of the island, including penguins, whales, seals and albatross. Those who wanted had a chance to jump into the water.
“The scenery as you went on down the Antarctica peninsula was just spectacular,” said Kendra. “Huge mountains. I had no idea that Antarctica had such huge mountains –10,000-foot mountains. Just towered up above us. It felt a little bit like the scenery in the Lord of the Rings at some points where we’re going through these huge caverns and glaciers all over. It really felt like a dreams at time for sure.”
The marathon in Antarctica pulled in roughly $235,000.
“That was a big accomplishment for our effort which is funding research for NF and enabling treatments,” said Kendra, whose team competes in 51 events around the country and has a rock star-like schedule this summer. “It was definitely one of our more successful fundraising events.”
But don’t think that Kendra and his team are resting any time soon. They’re ultimate goal is to run a marathon on every continent. So far, the team, which has had about 6,500 members over the organization’s existence, has checked Antarctica, North America, Europe and Australia off its list. In 2012, the NF Endurance Team is going to Africa and Kendra said there is talk of planning a trip to China to run in the Great Wall Marathon.
Along with marathons, the NF Endurance Team has competed in a number cycling races, including the Race Across America, which Kendra, Hardy and Edmonds have done twice.
“Who knows what’s next on the agenda,” said Edmonds. “No doubt I’ll be getting a call one of these days and it will be something else.”
From the bottom of the world, in one of the most desolate places on earth, Steve Kendra along with the help of his two childhood friends run to raise money and awareness for neurofibromatosis, a disease that Kendra’s daughter is battling.
The extent to which parents will go to in order to ensure their child’s safety, well being and overall happiness is astonishing.
The lengths friends will go to support each other is heartwarming.
This is a story of both.
Steve Kendra was in Boston last month on a business trip. Walking up Heartbreak Hill while shouting encouragements to runners passing by, it might not seem like a business trip, but he was definitely working. The 51-year old Hilltown native was coaching runners on the NF Endurance Team— NF Endurance is a nonprofit organization located in Sellersville that is a fundraising support arm of the Children’s Tumor Foundation (CTF)—who were competing in the Boston Marathon.
The weather was sunny and cool, lovely conditions for the annual race, a far cry from where Kendra, NF Endurance’s executive director, was this winter—Antarctica. His job, though, remained the same: to fix his daughter.
Kendra’s daughter suffers from neurofibromatosis, a genetic disorder that affects one in 3,000 births. According to NF Endurance’s website, “the disorder causes tumors to grow on nerves anywhere in the body, including the brain and the spinal cord. It can lead to blindness, deafness, chronic pain, disfigurement, learning disabilities, bone defects or abnormalities, cardiovascular problems, cancer and a wide range of other complications.”
His daughter, now 15 and a student at Pennridge High, has had 14 surgeries thus far, to correct an 88-degree curve in her back she had when she was two and a half years old. Early in the process, he felt like he needed to do more.
“I joined the [NF Endurance] team as a father and a child with NF back in year 2000,” said Kendra. “I ran the San Diego marathon. I think I’ve done about nine or 10 marathons ever since. Almost every year I run somewhere in some race.”
The NF Endurance Team gives individuals the chance to raise money for neurofibromatosis and promote awareness about the disorder by participating in team endurance sports.
“In the year 2000 or late 2000, December, my daughter was planning for her ninth surgery. It was a very difficult one," said Kendra. "Not so difficult medically, however, she just didn’t want to go in for that particular surgery. My wife (Judy) and I had a bit of a struggle even internally trying to get her to go into the operating room. I had sort of a period where I just felt like I had to do something more because as a parent, we want to fix things, we’re programmed to fix things. I couldn’t fix this. To see my daughter go through this was just awful, an awful experience. A helpless experience.”
Two weeks after his daughter’s operation, the director at the time of the NF Endurance resigned and there was talk of folding the foundation.
“They were doing close to $300,000 back then,” said Kendra. “My brother and I had a local business here in the Souderton, Sellersville area called Precision Solutions. We were in business together for 25 years. I called him up after I heard this guy resigned. I said, ‘Would you entertain the possibility of me leaving the business and doing something new with my life?’ And he did. He’s been very graceful about it ever since and very supportive of me doing this new career path which is has been the most amazing thing.”
A career path that has him running, literally in some cases, all over the world with the NF Endurance Team to raise money for neurofibromatosis research and treatment. In 2009, NF Endurance raised $1.4 million.
Running on the moon at the bottom of the world
It was the scene out of a sci-fi movie as the small cruise ship with the Russian crew docked on King George Island, the largest of the South Shetland Islands located at the top of the continent of Antarctica.
Other than the dozens of research stations, there aren’t many signs of life on the island.
After a fairly smooth 2 ½-day voyage through the Drake Passage, the 99 anxious runners aboard—12 of which represented the NF Endurance Team— emerged from the bowels of the ship onto the barren land. Among them were Kendra and two lifelong friends: Bill Hardy and Bill Edmonds.
Hardy, 46, and Edmonds, 48, both graduated from Pennridge in 1981 while Kendra graduated from Pennridge in 1977. They all grew up within a few miles of each other in Hilltown, where Kendra still lives in his childhood home. Hardy now lives in Harleysville and runs Hardy Machine Inc. in Hatfield, while Edmonds resides in Erwinna and runs the B&G Manufacturing Company in Hatfield.
They were three friends, life long friends, ready to run, ready to fight, ready to pick each other up. But why? Why go all the way to the bottom of the world? Why fly from Miami to Buenos Aires, Argentina, and from Buenos Aires fly to Ushuaia, Tierra del Fuego, and from there travel by ship across one of the roughest patches of sea in the world? Why leave your family behind for 17 days to just run 26.2 miles?
Their answers were simple.
“I got started running for myself,” explained Hardy. “A way to stay in shape. A way to curb the belly. Keep me going. Give me something to do. And as you’re running you meet these other people that are running for a cause. My good friend Steve Kendra’s daughter was born with NF, so we got to know what that was and we joined up with the team running, and as Steve committed to running the foundation we were more inspired to start running for other people. As I found out, when you do that type of thing—running for yourself is fun, but it gets boring—running for someone else is very inspiring.”
“I’m lucky to have a couple close friends that are involved in it,” said Edmonds. “Steve, obviously, made a big sacrifice for devoting his whole career for working for NF. He and my friend, Bill Hardy, are the ones that initially inspired me to get into doing this, to running and doing it for a cause. We do it to spend time with each other, to stay in shape and obviously for a cause, so we can raise money for a good cause. That’s why we signed up for it. We try and do a lot of different endurance events. I know Steve tried to get the team to do extreme and high profile events because it kind of goes along with the theme of endurance and signifies CTF and neurofibromatosis and people that have to deal with the affliction.”
“Both have rallied around [me],” said Kendra. “Life long friends of mine have rallied around my daughter and have sort of helped me out over the years.”
Throughout the whole race, Kendra had one of his daughter’s stuffed animals attached to his backpack.
“She has a pink monkey that I take and run with, that I take on most of these adventures that I go on,” said Kendra. “In Antarctica, I had sort of a camelback water supply that I was running with on and I had the pink money strapped to the back of the camelback to remind me. Sort of a metaphoric monkey on my back with NF and also sort of remind me of her and why I do what I do.”
Despite the muddy conditions, the three friends all finished the marathon, which was organized by Marathon Tours and Travel. Hardy finished first among the three. Kendra finished second and Edmonds finished five to 10 minutes behind Kendra.
“We ran mostly in mud,” said Kendra. “Anywhere between two inches in mud and I was up to my knees at some point. It took about an hour longer than I typically would run a marathon in. Maybe a little bit more than that because there were hills. There were 179 hills. Some of them, there was just no way to run up the hill. You had to walk and sometimes almost crawl to get up. The mud and the ice and snow as well, sort of slowed us up.”
The course began at the Russian research base and passed by several other stations setting the stage for a bizarre sight—marathon runners being cheered on by scientists at the bottom of the world.
Despite the mud, Kendra and company felt like they weren’t running on this earth.
“I really felt like I was running on the moon,” said Kendra. “There was no life. There was some moss on the ground, but there was no trees, bushes, nothing. Just ice, snow, rock, mud.”
Edmonds echoed Kendra’s thoughts.
“I don’t know if anything really surprised me other than just how empty and desolate it really is,” said Edmonds. “It’s just foreboding. You’re in that ship, you go up to that coast, you’re just looking at this rock and ice and icebergs. This whole place just seemed so foreboding and challenging that you learn something about these explorers.”
While mud was forecasted, Hardy mostly trained for the cold weather in the months leading up to the race.
“I did all of my training outside,” said Hardy. “It was the best winter that we could have had to train for this run. All the snow we had, the cold weather, the wind. I was out in all of it. It was great for training and preparing for clothing to wear because you don’t know what the weather is going to be if you don’t run in it. If you don’t have a clue you end up putting on too much clothes or not enough clothes.”
A day after the marathon, the locals had a chance to see more of the island, including penguins, whales, seals and albatross. Those who wanted had a chance to jump into the water.
“The scenery as you went on down the Antarctica peninsula was just spectacular,” said Kendra. “Huge mountains. I had no idea that Antarctica had such huge mountains –10,000-foot mountains. Just towered up above us. It felt a little bit like the scenery in the Lord of the Rings at some points where we’re going through these huge caverns and glaciers all over. It really felt like a dreams at time for sure.”
The marathon in Antarctica pulled in roughly $235,000.
“That was a big accomplishment for our effort which is funding research for NF and enabling treatments,” said Kendra, whose team competes in 51 events around the country and has a rock star-like schedule this summer. “It was definitely one of our more successful fundraising events.”
But don’t think that Kendra and his team are resting any time soon. They’re ultimate goal is to run a marathon on every continent. So far, the team, which has had about 6,500 members over the organization’s existence, has checked Antarctica, North America, Europe and Australia off its list. In 2012, the NF Endurance Team is going to Africa and Kendra said there is talk of planning a trip to China to run in the Great Wall Marathon.
Along with marathons, the NF Endurance Team has competed in a number cycling races, including the Race Across America, which Kendra, Hardy and Edmonds have done twice.
“Who knows what’s next on the agenda,” said Edmonds. “No doubt I’ll be getting a call one of these days and it will be something else.”
The extent to which parents will go to in order to ensure their child’s safety, well being and overall happiness is astonishing.
The lengths friends will go to support each other is heartwarming.
This is a story of both.
Steve Kendra was in Boston last month on a business trip. Walking up Heartbreak Hill while shouting encouragements to runners passing by, it might not seem like a business trip, but he was definitely working. The 51-year old Hilltown native was coaching runners on the NF Endurance Team— NF Endurance is a nonprofit organization located in Sellersville that is a fundraising support arm of the Children’s Tumor Foundation (CTF)—who were competing in the Boston Marathon.
The weather was sunny and cool, lovely conditions for the annual race, a far cry from where Kendra, NF Endurance’s executive director, was this winter—Antarctica. His job, though, remained the same: to fix his daughter.
Kendra’s daughter suffers from neurofibromatosis, a genetic disorder that affects one in 3,000 births. According to NF Endurance’s website, “the disorder causes tumors to grow on nerves anywhere in the body, including the brain and the spinal cord. It can lead to blindness, deafness, chronic pain, disfigurement, learning disabilities, bone defects or abnormalities, cardiovascular problems, cancer and a wide range of other complications.”
His daughter, now 15 and a student at Pennridge High, has had 14 surgeries thus far, to correct an 88-degree curve in her back she had when she was two and a half years old. Early in the process, he felt like he needed to do more.
“I joined the [NF Endurance] team as a father and a child with NF back in year 2000,” said Kendra. “I ran the San Diego marathon. I think I’ve done about nine or 10 marathons ever since. Almost every year I run somewhere in some race.”
The NF Endurance Team gives individuals the chance to raise money for neurofibromatosis and promote awareness about the disorder by participating in team endurance sports.
“In the year 2000 or late 2000, December, my daughter was planning for her ninth surgery. It was a very difficult one," said Kendra. "Not so difficult medically, however, she just didn’t want to go in for that particular surgery. My wife (Judy) and I had a bit of a struggle even internally trying to get her to go into the operating room. I had sort of a period where I just felt like I had to do something more because as a parent, we want to fix things, we’re programmed to fix things. I couldn’t fix this. To see my daughter go through this was just awful, an awful experience. A helpless experience.”
Two weeks after his daughter’s operation, the director at the time of the NF Endurance resigned and there was talk of folding the foundation.
“They were doing close to $300,000 back then,” said Kendra. “My brother and I had a local business here in the Souderton, Sellersville area called Precision Solutions. We were in business together for 25 years. I called him up after I heard this guy resigned. I said, ‘Would you entertain the possibility of me leaving the business and doing something new with my life?’ And he did. He’s been very graceful about it ever since and very supportive of me doing this new career path which is has been the most amazing thing.”
A career path that has him running, literally in some cases, all over the world with the NF Endurance Team to raise money for neurofibromatosis research and treatment. In 2009, NF Endurance raised $1.4 million.
Running on the moon at the bottom of the world
It was the scene out of a sci-fi movie as the small cruise ship with the Russian crew docked on King George Island, the largest of the South Shetland Islands located at the top of the continent of Antarctica.
Other than the dozens of research stations, there aren’t many signs of life on the island.
After a fairly smooth 2 ½-day voyage through the Drake Passage, the 99 anxious runners aboard—12 of which represented the NF Endurance Team— emerged from the bowels of the ship onto the barren land. Among them were Kendra and two lifelong friends: Bill Hardy and Bill Edmonds.
Hardy, 46, and Edmonds, 48, both graduated from Pennridge in 1981 while Kendra graduated from Pennridge in 1977. They all grew up within a few miles of each other in Hilltown, where Kendra still lives in his childhood home. Hardy now lives in Harleysville and runs Hardy Machine Inc. in Hatfield, while Edmonds resides in Erwinna and runs the B&G Manufacturing Company in Hatfield.
They were three friends, life long friends, ready to run, ready to fight, ready to pick each other up. But why? Why go all the way to the bottom of the world? Why fly from Miami to Buenos Aires, Argentina, and from Buenos Aires fly to Ushuaia, Tierra del Fuego, and from there travel by ship across one of the roughest patches of sea in the world? Why leave your family behind for 17 days to just run 26.2 miles?
Their answers were simple.
“I got started running for myself,” explained Hardy. “A way to stay in shape. A way to curb the belly. Keep me going. Give me something to do. And as you’re running you meet these other people that are running for a cause. My good friend Steve Kendra’s daughter was born with NF, so we got to know what that was and we joined up with the team running, and as Steve committed to running the foundation we were more inspired to start running for other people. As I found out, when you do that type of thing—running for yourself is fun, but it gets boring—running for someone else is very inspiring.”
“I’m lucky to have a couple close friends that are involved in it,” said Edmonds. “Steve, obviously, made a big sacrifice for devoting his whole career for working for NF. He and my friend, Bill Hardy, are the ones that initially inspired me to get into doing this, to running and doing it for a cause. We do it to spend time with each other, to stay in shape and obviously for a cause, so we can raise money for a good cause. That’s why we signed up for it. We try and do a lot of different endurance events. I know Steve tried to get the team to do extreme and high profile events because it kind of goes along with the theme of endurance and signifies CTF and neurofibromatosis and people that have to deal with the affliction.”
“Both have rallied around [me],” said Kendra. “Life long friends of mine have rallied around my daughter and have sort of helped me out over the years.”
Throughout the whole race, Kendra had one of his daughter’s stuffed animals attached to his backpack.
“She has a pink monkey that I take and run with, that I take on most of these adventures that I go on,” said Kendra. “In Antarctica, I had sort of a camelback water supply that I was running with on and I had the pink money strapped to the back of the camelback to remind me. Sort of a metaphoric monkey on my back with NF and also sort of remind me of her and why I do what I do.”
Despite the muddy conditions, the three friends all finished the marathon, which was organized by Marathon Tours and Travel. Hardy finished first among the three. Kendra finished second and Edmonds finished five to 10 minutes behind Kendra.
“We ran mostly in mud,” said Kendra. “Anywhere between two inches in mud and I was up to my knees at some point. It took about an hour longer than I typically would run a marathon in. Maybe a little bit more than that because there were hills. There were 179 hills. Some of them, there was just no way to run up the hill. You had to walk and sometimes almost crawl to get up. The mud and the ice and snow as well, sort of slowed us up.”
The course began at the Russian research base and passed by several other stations setting the stage for a bizarre sight—marathon runners being cheered on by scientists at the bottom of the world.
Despite the mud, Kendra and company felt like they weren’t running on this earth.
“I really felt like I was running on the moon,” said Kendra. “There was no life. There was some moss on the ground, but there was no trees, bushes, nothing. Just ice, snow, rock, mud.”
Edmonds echoed Kendra’s thoughts.
“I don’t know if anything really surprised me other than just how empty and desolate it really is,” said Edmonds. “It’s just foreboding. You’re in that ship, you go up to that coast, you’re just looking at this rock and ice and icebergs. This whole place just seemed so foreboding and challenging that you learn something about these explorers.”
While mud was forecasted, Hardy mostly trained for the cold weather in the months leading up to the race.
“I did all of my training outside,” said Hardy. “It was the best winter that we could have had to train for this run. All the snow we had, the cold weather, the wind. I was out in all of it. It was great for training and preparing for clothing to wear because you don’t know what the weather is going to be if you don’t run in it. If you don’t have a clue you end up putting on too much clothes or not enough clothes.”
A day after the marathon, the locals had a chance to see more of the island, including penguins, whales, seals and albatross. Those who wanted had a chance to jump into the water.
“The scenery as you went on down the Antarctica peninsula was just spectacular,” said Kendra. “Huge mountains. I had no idea that Antarctica had such huge mountains –10,000-foot mountains. Just towered up above us. It felt a little bit like the scenery in the Lord of the Rings at some points where we’re going through these huge caverns and glaciers all over. It really felt like a dreams at time for sure.”
The marathon in Antarctica pulled in roughly $235,000.
“That was a big accomplishment for our effort which is funding research for NF and enabling treatments,” said Kendra, whose team competes in 51 events around the country and has a rock star-like schedule this summer. “It was definitely one of our more successful fundraising events.”
But don’t think that Kendra and his team are resting any time soon. They’re ultimate goal is to run a marathon on every continent. So far, the team, which has had about 6,500 members over the organization’s existence, has checked Antarctica, North America, Europe and Australia off its list. In 2012, the NF Endurance Team is going to Africa and Kendra said there is talk of planning a trip to China to run in the Great Wall Marathon.
Along with marathons, the NF Endurance Team has competed in a number cycling races, including the Race Across America, which Kendra, Hardy and Edmonds have done twice.
“Who knows what’s next on the agenda,” said Edmonds. “No doubt I’ll be getting a call one of these days and it will be something else.”
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