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Ride For Charcot-Marie-Tooth Awareness & Research: 2016 TD Bank Five Boro Bike Tour

Ride For Charcot-Marie-Tooth Awareness & Research: 2016 TD Bank Five Boro Bike Tour

The Hereditary Neuropathy Foundation (HNF) is thrilled to participate as a Charity Partner for the 2016 TD Bank Five Boro Bike Tour for the fifth year in a row. This is an extraordinary event where participants bike through all five New York boroughs to help increase awareness and raise dollars to fund Charcot-Marie-Tooth (CMT) research.

Update on Michael Watkins – Team CMT Member

Update on Michael Watkins – Team CMT Member

Michael Watkins completed the Leadville Trail 100 MTB race on August 15, 2015 in Leadville, CO. The trail race is widely considered one of the toughest mountain biking races in the country. Michael has been logging 200 – 225 miles on the bike each week to prepare for the big day. Michael has a wonderful support system with his family and friends. He received a surprise from his brothers in early July to accompany him on the most difficult portions of the trail to test if he was physically able to take on the course and how his body would react and cope with the altitude. In late June, he was fitted for two custom-made low AFO’s that he wore during the race to help him with the steeper rocky sections that he will most likely have to walk. These are being made at no cost to him courtesy of generous friend of his family who is a PT/Clinical Electrophysiologist. Throughout training, Michael stayed motivated by thinking “sometimes we just have to work a little harder than most to get what we want and the harder you work at something the greater the feeling you have when it’s over”. That helped him throughout his training runs and took him to the finish line. Congratulations on your tremendous accomplishment! Click here to support...
My last month in numbers

My last month in numbers

It has been entirely too long since I’ve updated my blog and so much has happened since late April. I thought I would share some info on what I’ve been up to since my last post on April 29th Miles Ridden:  1,013.81 Time spent on a bike:  77 hours, 04 minutes Calories burned:  31,335 Total elevation climbed:  71,454′ Longest ride:  103.72 miles Shortest ride:  8.71 miles Most consecutive days without riding a bike:  4 States in which I’ve ridden:  4 Number of times my wife has said “Don’t go today, just hang out with us at home, you can train later”: Update on my health I had the ultra sound on my carotid arteries and everything was fine, as was the results of the EKG for my dizzy spells. The doctors believe the lightheaded feelings I was having were just my body trying to adjust to the lower pulse rate and possibly from my lower body weight and it should (and has) get better over time. I did injure my back last month 3 days before I competed in my first mountain bike race in 13 or so years, and it was a 6 hour race to boot! I had Heather my wife tape it up with KT tape the morning of the race and downed a few Advil along the way. As you can imagine it’s hard to heal a back when you ride constantly so I ended up taking 4 days off the bike to give it time to heal, which it finally did late last week. Big rides and races I’ve had several big rides since...
Bike NY Spotlight: Kristin Gelzins

Bike NY Spotlight: Kristin Gelzins

Growing up, I was an all star softball player and an avid runner. Nothing could hold me back from just about anything, from skiing to hiking, biking and kayaking. I was in school to get my nursing degree while I worked as an EMT which I loved doing. When I was 21 years old I worked down at the World Trade Centers as an EMT which set my asthma into overdrive. The many attacks I had landed me in the hospital and on steroids numerous times. At 22 I had lost a significant amount of muscle tone in my legs, and developed avascular necrosis (is the death of bone tissue due to a lack of blood supply). I was sent to a neurologist who at the time treated all of the current problems I was having with the steroid (prednisone). After about a year of seeing no improvement, I wasn’t taking any excuses. I was put through test after test. I had both of my hips replaced after failed bone grafts at age 28, and by the time I was 29, I was pregnant and relying on crutches and a wheelchair to get around. I went back to my neurologist and demanded answers. After he was done looking over all of my testing, including the genetic testing that was done years before, the words CharcotMarie-Tooth came out of his mouth. Now it finally all made sense to me. I now know what I’m dealing with, and I’m glad I pushed for answers. Since I’ve had my son, I stopped relying so heavily on my wheelchair and started becoming more...
Team CMT Takes on the Bermuda Triple Challenge

Team CMT Takes on the Bermuda Triple Challenge

Meet Team CMT member Bill Morgan. Bill and Liz (his wife) recently ran three races back to back in Bermuda for Team CMT. “Let us run the risk of wearing out, rather than rusting out.” – Teddy Roosevelt Our first race as Team CMT members was the Bermuda Triangle Triple Challenge. It was held in Hamilton, Bermuda on January 16th, 17th and 18th, 2015. The race consisted of three series, a one mile run on Friday night followed by a 10K on Saturday morning and finishing with a Half Marathon on Sunday morning. The course was absolutely beautiful, but very challenging. Bermuda is very hilly! The one mile race on Friday night was exciting to participate in as it is the “Bermuda Invitation Mile” and we had the pleasure to see world class runners compete. What a great way to start our visit to Bermuda! The 10K on Saturday morning took us through the interior of Bermuda and gave us the opportunity to see the landscape of this beautiful island. We had heard Bermuda was hilly, but we were not expecting what this course held for us. The constant uphill/ downhill made this one of the hardest 10K’s we have ever run! After finishing and enjoying the rest of the day exploring Bermuda, we prepared for the Half Marathon the next morning. The Half Marathon on Sunday took us around the perimeter of the island where we were treated to breathtaking views of the beaches and shoreline. This course was also very hilly, but we were prepared for it and had a great race. Liz accomplished a Half Marathon...
Sunday May 1, 2016: 2016 TD Bank Five Boro Bike Tour

Sunday May 1, 2016: 2016 TD Bank Five Boro Bike Tour

HNF is thrilled to have been chosen for the fifth year as a Charity Partner for the 2016 TD Bank Five Boro Bike Tour.  This means more participants riding to increase awareness of Charcot-Marie-Tooth, and thousands more dollars raised to fund research into treatments and a cure.  Click on the button below to register to ride or to sponsor a rider. You won’t want to miss this!  The only way to be a part of the 2015 TD Five Boro Bike Tour is to ride with a Charity Partner like the Hereditary Neuropathy Foundation, so dust off that Schwinn and meet us in the Big Apple! Click here to register!  Question email [email protected]  ...
Member Alyson O’Connor Won’t Let Her CMT Stop Her!

Member Alyson O’Connor Won’t Let Her CMT Stop Her!

Allyson O’Connor won’t let CMT get her down. She was unofficially diagnosed at the age of 10. Her Dad had the same symptoms, but at the time genetic tests were not available. Her diagnosis was based on an EMG. After having her two children, now age 8 and 6, she decided it was important to determine if she definitely had CMT.

Meet your Team CMT Manager

Meet your Team CMT Manager

Meet your Team CMT Manager “You must always carry an unsolvable problem in your heart.”- Persian Poet Rumi CMT is the unsolvable problem I carry in my heart.  I didn’t even know how to pronounce it when I first heard of it. The first time I heard the words “Charcot-Marie-Tooth” was when my sister emailed me her daughters were diagnosed with the condition. When I went to the web and read the symptoms I knew I had it too. I share CMT with my dad, aunt, sister and two nieces.  I think several of my five brothers have undiagnosed CMT. I was diagnosed with CMT type 1a in August of 2010. I was relieved to put a name to symptoms I’ve had my whole life.  I knew 12 years ago after a bike accident that I had some neurological condition.  After being tested for ALS, MS and a host of other scary conditions I decided not to pursue it. I found out from my dad several years later that he and his sister had a genetic nerve disorder. When my nieces were diagnosed all the pieces came together. I had all the typical CMT symptoms; falls, tripping, rolling ankles, awful hand writing, difficulty running, tiredness, pain.  My knees were constantly scrapped as a kid from all the falls.  Every time I go for a hike I fall at least once. Although clumsy I always lead an active life.  Days were full of sports with my brothers playing football, baseball and riding our bikes. Still I never felt like an athlete since I was always the slowest kid in the class and it was...
School Outreach Program and Team CMT Kids

School Outreach Program and Team CMT Kids

Arlene is going to Dallas! HNF has added a new component to its successful School Outreach Program, aimed at deepening students’ understanding of disability as a difference that can be embraced as one part of a beautiful whole. Through Team CMT Kids, schools can join forces with HNF and raise money to cure CMT through fun events that get kids active and involved in making a difference. Our first stop is Dallas, TX, where HNF will visit elementary schools on May 16-17th, and then cheer our Team CMT Kids members on as they participate in a youth triathlon event  sponsored by Playtri. Our School Outreach Program features the book Arlene On the Scene and the upcoming sequel, Arlene, the Rebel Queen (available on March 26th). Author Carol Liu visits schools throughout the country to talk about important social-emotional concepts from the book, including self-image, empathy, and growing up different. Now in its third year, HNF’s School Outreach Program has visited over 75 elementary schools, from New York to Los Angeles, New England to Texas, and many points in between. Tens of thousands of children have learned about Charcot-Marie-Tooth through these presentations and the book, and we gain new partners in our mission to one day find treatments for CMT. The sequel, Arlene, the Rebel Queen, is about change—how to take it and how to make it. Through our School Outreach Program and our children’s book series, HNF is helping kids understand the value in diversity, the need for empathy and understanding, and the power of just one person to change the world. These ideas all come together in Team CMT Kids, where...
HNF Charity Partner: TD Five Boro Bike Tour May 4, 2014

HNF Charity Partner: TD Five Boro Bike Tour May 4, 2014

  HNF is thrilled to have been chosen for the 4rd year as a Charity Partner for the TD Bank Five Boro Bike Tour. This means more participants riding to increase awareness of Charcot-Marie-Tooth, and thousands more dollars raised to fund research into treatments and a cure. This year we were given 10 spots! Team CMT members will have first dibs. For more information contact [email protected] to be a part of the Five Boro Bike Tour to ride with the Hereditary Neuropathy Foundation, so dust off that Schwinn and meet us in the Big...
TEAM CMT & CHRIS WODKE

TEAM CMT & CHRIS WODKE

Boasting a growing membership, Team CMT and the Hereditary Neuropathy Foundation (HNF) are celebrating a successful first year of collaboration.  Founder Chris Wodke created Team CMT in January 2011 specifically to raise funds and awareness.  “When I started this team I thought I was the only one with CMT running long distance.” Four months later she joined Team CMT with HNF and soon reported, “There are twelve athletes on Team CMT, with a diagnosis of CMT, that run long distance. This has been such a wonderful experience I can’t wait to see what will happen next.” Presently, Team CMT has over 110 members in 17 states.  Twenty four of the 110 members are affected with CMT.  Wodke refers to them as “our 24 miracles” because doctors used to advise people with CMT not to run.  The remaining members are friends and family who have joined to support their loved ones and the cause.  She hopes by meeting others with CMT, team members can feel a sense of belonging as athletes. “These people are truly unlikely heros,” Wodke says. “They wear their leg braces uncovered and carry brochures about CMT to educate people along the way.  It takes so much courage to take the risk to be open about our condition.” Wodke is hoping to run the Boston Marathon on Monday, April 15, 2013, for the second time.    Following an injury last May, Wodke developed a lump on her right ankle.  She kept running but when it didn’t get better by September she decided it was time to stop.  Sidelined for two and one half months, Wodke was relieved at...
Running for Three Generations with CMT

Running for Three Generations with CMT

“I never liked running,” confesses Air Force Master Sargent Darrell Wright.  “It’s always been really hard for me because it is so boring and I didn’t have any drive.  But it is a mandatory part of physical training for the military so I had to do it.”  Wright, 41, grew up in Utah.  In 1992 a few years after graduating from high school he decided to join the Air Force where he earned his bachelor’s degree and currently is finishing his Masters.  He works on computers and maintains communications.  “The Air Force isn’t for everyone” he says.  “I think of us as the support branch of the military, supporting those on the ground.” It is a role that suits him. These days, inspired by his love of family he runs on behalf of three generations of women with Charcot-Marie-Tooth disease (CMT).  “As I started getting older, I began to have a different perspective about health. I’ve got two beautiful kids and I want to be around for them and be healthy for myself.” He began to change his attitude about running from boring to challenging.  “When I see that I am pushing passed 7-8-9 or 10 miles, I feel good because I accomplished it.  I’ve pushed past my boundaries and I run 6 miles a day 4 or 5 times a week. Now I enjoy it because it relaxes me. It totally helps with stress.”  A Team CMT member, Wright will run to raise funds toward research and a cure for CMT.  Along the way, he’ll be cheered on by those three women; his wife Christina, his daughter Dean...