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Wednesday, July 27, 2016

HNF Patient Conference Speaker


Another glimpse of what is in store at the October HNF patient conference.



 Stefanie Sacks, our keynote speaker at the first Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016 in New York City.  This announcement was released by the HNF this week.
One of the keynote speakers announced this week is Stefanie Sacks.  she is a, MS, CNS, CDN and Culinary Nutritionist, author, consultant, speaker and food firebrand!
She has been studying food and healing for 30 years, has her Masters of Science in nutrition from Teachers College, Columbia University, is a Certified Nutrition Specialist, Certified Dietitian Nutritionist and is a graduate of the Natural Gourmet Institute for Health and Culinary Arts.
Stefanie works hands-on with individuals and groups seeking a healthier way of eating. For companies and organizations looking to do the right thing for their consumers and environment, Stefanie is the go-to-gal—her unique background in food and agriculture as well as health and wellness gives her the knowledge and skills to guide groups towards true food transparency, sustainability and ultimately health as a consultant, speaker and media expert.
Stefanie will also lead a panel discussion on "Personalized Nutritional and Exercise Prescription for the CMT/IPN Patient." 
How many times have you heard...
“Exercise, but don’t overdo it." 
“Eat more protein and less veggies and fruits."

She will be joined by other nutritional and exercise experts to discuss what works best for CMT patients.

HNF Patient Conference Speaker


Another glimpse of what is in store at the October HNF patient conference.



 Stefanie Sacks, our keynote speaker at the first Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016 in New York City.  This announcement was released by the HNF this week.
One of the keynote speakers announced this week is Stefanie Sacks.  she is a, MS, CNS, CDN and Culinary Nutritionist, author, consultant, speaker and food firebrand!
She has been studying food and healing for 30 years, has her Masters of Science in nutrition from Teachers College, Columbia University, is a Certified Nutrition Specialist, Certified Dietitian Nutritionist and is a graduate of the Natural Gourmet Institute for Health and Culinary Arts.
Stefanie works hands-on with individuals and groups seeking a healthier way of eating. For companies and organizations looking to do the right thing for their consumers and environment, Stefanie is the go-to-gal—her unique background in food and agriculture as well as health and wellness gives her the knowledge and skills to guide groups towards true food transparency, sustainability and ultimately health as a consultant, speaker and media expert.
Stefanie will also lead a panel discussion on "Personalized Nutritional and Exercise Prescription for the CMT/IPN Patient." 
How many times have you heard...
“Exercise, but don’t overdo it." 
“Eat more protein and less veggies and fruits."

She will be joined by other nutritional and exercise experts to discuss what works best for CMT patients.

Sunday, July 24, 2016

Salad Sunday-Spring Strawberry Chicken Salad


I read recently that when you eat greens the vitamins and minerals are better absorbed if a food high in vitamin C is part of the mix. Good candidates are oranges, tomatoes and blueberries.  I added strawberries to this one along with tomatoes.


1 box (5 oz.) Baby Spinach and Spring Salad Mix
1 quart fresh strawberries sliced
1 avocado diced
½ cup chopped celery
1 small yellow zucchini diced
1 cup baby carrots sliced
4 ounces mushrooms sliced
1 chicken thighs, seasoned, baked and shredded
½ cup sunflower seeds

Dressing
½ cup olive oil
¼ cup apple cider vinegar
2 tablespoons honey
1 tablespoon poppy seeds
2 teaspoons grated lemon grass ( can use tablespoon of lemon juice instead)


Combine all of the vegetables and mix until evenly distributed. Add the chicken on the top.  Combine all the dressing ingredients and pour over the mixture. Add the sunflower seeds. Serves 6
*****************************
Chris Wodke at PATCO Dallas 2014
Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 196 members in 37 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing

Friday, July 22, 2016

HNF Patient Conference- Featured Speaker



Patient-Centered Charcot-Marie-Tooth Summit Agenda Highlight

Florian P Thomas, MD, MA, PhD, MS; Chairman, Neuroscience Institute, and Director, Hereditary Neuropathy Center, Hackensack University Medical Center
Dr. Thomas says that the squeaky wheel gets the grease -->
"The art of being a successful patient is to know how to get on your doctor’s nerves and feel good about it."

The Chair of HNF Centers of Excellence speaks out on knowledge gaps among health care professionals, how to identify providers that are well versed in CMT, what patients should expect from their providers, and how they can advocate for themselves or loved ones.
Don't miss this very important discussion at our Summit. Come join Dr. Thomas and learn how to get under your doctor's skin!
Register today! cmtsummit.org

HNF Patient Conference- Featured Speaker



Patient-Centered Charcot-Marie-Tooth Summit Agenda Highlight

Florian P Thomas, MD, MA, PhD, MS; Chairman, Neuroscience Institute, and Director, Hereditary Neuropathy Center, Hackensack University Medical Center
Dr. Thomas says that the squeaky wheel gets the grease -->
"The art of being a successful patient is to know how to get on your doctor’s nerves and feel good about it."

The Chair of HNF Centers of Excellence speaks out on knowledge gaps among health care professionals, how to identify providers that are well versed in CMT, what patients should expect from their providers, and how they can advocate for themselves or loved ones.
Don't miss this very important discussion at our Summit. Come join Dr. Thomas and learn how to get under your doctor's skin!
Register today! cmtsummit.org

Tuesday, July 19, 2016

Racing-Back to Basics

Cheryl Kearney and Chris Wodke at Firecracker 4 race

"The trees that are slow to grow bear the best fruit."- Moliere

I started my life as a competitive athlete doing local runs.  My friend Cheryl Kearney got me into racing when we were roommates after college. Years later I returned the favor when I got here doing triathlons.

I have pretty much transitioned into doing only multi-sport events. The last time I did a running race was a 5K two years ago.  When I looked at the time for my run in my latest triathlon, I knew there was room for improvement. I used to be able to run a 5K in about 23 minutes. My recent run time for my last triathlon was over 31 minutes.

My running has taken a back seat to swim and biking as I trained for a 1/2 iron distance aqua bike.
So I decided it was time to race into better racing shape.  I signed up for two races, a 4 mile race on July 4th and a Beer Garden 5K a few days later.

Firecracker 4 Mile-Hales Corners
This race is run by the local running club. So it is a huge race. I would use it for training,
My goal was to finish in under 40 minutes. I hit the first mile marker at 9 minutes. I was really excited.   I just kept rolling along and enjoying the scenery. The race winds through the local sub-divisions and I even saw someone from my former ski patrol. Lots of the residents put out sprinklers for the runners to run through. I had a blast. I forgot how much run a run race can be. It is so nice to come all dressed and ready to go. No swim or bike gear and no transition to get ready.  I crossed the finish line in 38 minutes 30 seconds, well below my goal. My friend Cheryl took 4th place. I am not sure where I finished, but I was happy with my result

Beer Garden Run- Grant Park
This race was just two days later and I decided to run intervals during the race just like I do in training. Being in a race, pushes me much more than I would do on my own.

I loved this race venue. It was in a local park pretty close to home. There is a traveling beer garden that spends 2 weeks at different parks over the summer. There has been a race series following the traveling beer garden and this week in was in Grant Park. I got there early to snag a good parking spot and used the time to go for a short bike ride.  It was a great way to warm up. I did a short run warm up and lined up with 1000 other runners.

I did my intervals and was hanging strong until the last half mile. I did one less interval than planned.   I finished in 28:48, just 12 seconds out of 3rd place.  I felt good about that because there were about 30 women in my age group.  The finish line was right by the entrance to the beer garden. Every runner got a pint glass filled with beer or root beer.  I shared a table with a few locals while I waited for results.

So both races were lots of fun. I have a 10K scheduled on August 13th for the Senior Olympics.  After these races I will be adding more running races to my schedule.  I am looking forward to racing back in shape and improving my running times.  I will really need that as I compete at the Aquathlon World Championship in Cozumel in September.

****************************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 196 members in 37 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.

CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing

Sunday, July 17, 2016

Soup Sunday- Beef Soup with Bean Sprouts



Beef Soup with Bean Sprouts
 4 ounces white mushrooms
1 tablespoon butter
½ chopped onions
½ cup chopped celery
4 cups beef broth
1 tablespoon red chili paste
3 tablespoons soy sauce
2 tablespoons fish sauce
½ cup chopped carrots
1 tablespoon red chili paste
2 cups fresh bean sprouts
4 ounces of tofu, sliced into small pieces
Salt and pepper to taste

Heat butter in bottom of stock pot.  Add the mushrooms, onions and celery. Cook until the mushrooms are cooked.  Add the beef broth, soy sauce, fish sauce, chili paste and carrots. Heat until the soup just starts to boil. Turn down the heat to a simmer. Add the carrots and cook until the carrots are cooked. Add the bean sprouts and tofu. Heat for about 2 minutes.


Serves 4

*********************


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent Team USA at the Aquathon ITU World Championship in Chicago in 2015 and 2016

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 188 members in 35 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing

Saturday, July 16, 2016

Super Food Saturday- Healthy Brownies


I work hard at having a healthy diet most of the time.  I still have a fondness for sugar and it has been hard to completely give up sweets. So it is nice when I come across a recipe that lets me have a treat and is still pretty healthy. I adapted this recipe from one on Dr. Josh Axe's web site.


Healthy Brownies

1 avocado
4 eggs
1 ½ cup cooked sweet potato mashed
½ cup applesauce
½ cup honey
1 teaspoon chocolate extract
½ cup coconut flour
2 tablespoons arrowroot powder
½ cup cacao powder
1 teaspoon baking powder
½ cup chopped pecans

Preheat oven to 375 F degrees. Grease a 9 inch round cake pan with coconut oil.  In a bowl combine avocado, sweet potato, applesauce, honey and extract.  Once creamy add the cacao powder.  Add in the eggs one at a time, mixing well after each addition.

In a separate bowl, combine coconut flour, arrowroot flour and baking soda.  Combine both mixtures until smooth.  Transfer to the greased pan. Bake until done. Test by inserting a knife in the middle of the pan.  Will take about 40 minutes.

Allow the pan to cool for 15 minutes, then remove the brownies and allow to cool on a wire rack. When cool sprinkle with powdered sugar before serving.


Super Foods Featured: Sweet Potato, Avocado

*****************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 196 members in 37 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing

Super Food Saturday- Healthy Brownies


I work hard at having a healthy diet most of the time.  I still have a fondness for sugar and it has been hard to completely give up sweets. So it is nice when I come across a recipe that lets me have a treat and is still pretty healthy. I adapted this recipe from one on Dr. Josh Axe's web site.


Healthy Brownies

1 avocado
4 eggs
1 ½ cup cooked sweet potato mashed
½ cup applesauce
½ cup honey
1 teaspoon chocolate extract
½ cup coconut flour
2 tablespoons arrowroot powder
½ cup cacao powder
1 teaspoon baking powder
½ cup chopped pecans

Preheat oven to 375 F degrees. Grease a 9 inch round cake pan with coconut oil.  In a bowl combine avocado, sweet potato, applesauce, honey and extract.  Once creamy add the cacao powder.  Add in the eggs one at a time, mixing well after each addition.

In a separate bowl, combine coconut flour, arrowroot flour and baking soda.  Combine both mixtures until smooth.  Transfer to the greased pan. Bake until done. Test by inserting a knife in the middle of the pan.  Will take about 40 minutes.

Allow the pan to cool for 15 minutes, then remove the brownies and allow to cool on a wire rack. When cool sprinkle with powdered sugar before serving.


Super Foods Featured: Sweet Potato, Avocado

*****************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 196 members in 37 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing

Thursday, July 14, 2016

Verona Triathlon Race Report- An Unexpected Result



"Events will take their course, it is no good being angry at them; he is happiest who wisely turn them to their best account. "- Euripides

I'm a bit behind in my race reports. I've been busy working and racing.  I decided to do the 2nd race in the Wisconsin Triathlon Series. The race was in Verona Wisconsin which is near our state capitol Madison.

I have family in the Madison area, so a race seemed like a good excuse for a visit. I know the run course pretty well. The indoor triathlon I've done the last three years in February took place just up the street from Fireman's park.

The run course in fact used some of the same route.

I had a rough swim at the Lake Mills triathlon, just a few weeks earlier.  The rough water caused some anxiety for me and I almost dropped out. I ended up 4th in my age group.

I had a few good open water swim practices so I was ready for another race.
As usual I was at the race site really early. I set up and headed for the swim start.

I chatted with a few races and got in to do my pre-race warm-up. I used to think that I could not afford the energy to warm up. I have since learned I race much better and more calmly when I spend some time warming up.

I would be wearing a wet suit. It does make me faster and more confident in the water. I got in and floated around on my back and just enjoyed the lake. I then swam for a few minutes and did a few accelerations. The lake was warm and incredibly clear.

It was not long before my wave was taking off for our 400 meter swim. I had a great swim, calm and fun.  I was far from the last out of the water.

I signed up for this race because last year there was only one woman in my age group. I knew I had a good chance to get a medal. Plus the 11 mile bike leg set up well for me. The bike is where I seem to lag farthest behind other athletes.

The bike was a bit hilly but was done before I knew it. I averaged 16 miles per hour. As I came out of transition I was directed onto the run course by a volunteer. The course was a circle with a few left turns to the finish.  I felt like I was having a good race.

I saw a woman from the 50 to 54 age group pass me. She had finished ahead of me at the indoor try. I thought I must be having a really good race.

Way too soon I was at the finish line. I looked at my watch and the finish clock and knew something was wrong.  When I got the print out of my results it said I finished the run in 17 min 35 second for a split of 5 min 35 seconds.

I knew the run time was wrong and I had not run a full 5K. What I did not know was if I had run the same course as everyone else. It was possible the course had been shortened. I did not intend to cut the course and followed the direction of all race volunteers. I was always in a group of runners.

I did not pick up my medal since I wanted to wait to contact the race director.  I noticed the next day my time was not listed in the race results. The timing company told me my time was flagged because it was so fast. I explained what happened and he told me a large number of athletes were directed the wrong way and I must have been one of them.

So now I contacted the race director.  My typical run time would have put me in a solid 3rd place and possibly even 2nd. There were 7 or so finishers in my age group. I asked the race director to adjust my time since what happened was not my fault.

After some very civil emails we resolved I would get points for the series for a 3rd place finish and he would give me an free entry to another race.  Because there are 6 races in the series points are kept based on your finish for series awards. So now I have a 3rd and 4th place finish. I plan on doing at least two more races.

The director runs a great a events and mistakes happen.  It was just one of those things and there is no use getting mad about it. It was disappointing to lose out on placement, but he did his best to make it up to me.  The good thing is I had a great race and a lot of fun. I will be back for another race on September 4th again in the Madison area.

****************************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 196 members in 37 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

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Tuesday, July 12, 2016

HNF Hosts Patient Conference



The HNF will be hosting a patient conference this October. Here is the agenda for the day. Hope to meet many of you there. I will be part of the panel discussion on nutrition and exercise.   Go to the HNF site to register.

Join us for the first Patient-Centered Charcot-Marie-Tooth Summit
7:30am – 8:15am:  Continental Breakfast
8:15am – 8:30am:  Opening remarks
8:30am – 9:00am: Keynote Speaker: Culinary Nutritionist, Stefanie Sacks, MS, CNS, CDN and Author of What the Fork Are You Eating? | “An Action Plan for Your Pantry and Plate”   
Navigating nourishment and learning how to cook CAN make a difference in how you feel—small changes in food choice can be part of YOUR prescription for healing.
9:00am – 9:20am: Speaker: Kim Goodsell, CMT Patient, “The Patient of the Future”
How an extreme athlete uncovered her own genetic flaw. When Kim Goodsell discovered that she had two extremely rare genetic diseases, she taught herself genetics to help find out why.
9:25am – 10:00am: Panel Discussion: Lori Sames, Founder of Hannah’s Hope Fund, “Genotype and Phenotype: Managing Symptoms, The Role of Researchers/Clinicians”
CMT has many different forms – each with different causes and symptoms. Lori Sames, “Fighter Mom” of a child with a form of IPN, champions gene therapy and shares how researchers and clinicians can help.
10:00am – 10:30am Break
10:30am – 11:10am  “Public Policy”
Better AFO (leg-bracing) options, fast-tracking drug discoveries and clinical trials, applying for disability benefits, Medicare/Medicaid and services you may be eligible for. These pose a real challenge to CMT/IPN patients. How can we empower one voice for change in the system?
11:15am – 12:00pm: Speakers: Dr. Michael Sereda, Dr. Lucia Notterpek and Dr. Andy Grierson “Research Presentations”
Hear the latest from researchers on translational drug discovery, clinical trials and more!
12:00pm – 12:45pm: Working Lunch: Gary Barg, CMT patient and advocate, “The Fearless Caregiver: The Caregiver’s Voice Matters and the Role of the Caregiver in Patient-Driven Research”
Survey results show that 39% of adults, that’s 90 million Americans, are caregivers. Let’s discuss reducing the caregiver’s stress, learning ways to communicate effectively with healthcare providers, and the caregiver’s role in clinical trials, and more.
1:00pm – 1:40pm: Panel Discussion: Stefanie Sacks, Moderator “Personalized Nutritional and Exercise Prescription for the CMT/IPN patient”
How many times have we heard, “Exercise, but don’t overdo it”? “Eat more protein and less veggies and fruits”?  We’ll discuss what works best from actual CMT patients, and nutritional and exercise experts.
1:45pm – 2:25pm:  Panel Discussion: James Nussbaum, PhD, PT “Gaps in Available Patient Reported Outcomes and Barriers to Therapy Development”
Discussion about the importance of the accurate assessment of how a patient improves from a baseline measurement and new technology tools to be used by clinicians to quantify change.
2:30pm – 3:00pmBreak
3:00pm – 3:40pm: Panel Discussion: Florian P Thomas, MD, MA, PhD, MS; Chairman, Neuroscience Institute, and Director, Hereditary Neuropathy Center, Hackensack University Medical Center, “The Squeaky Wheel Gets the Grease: The Art of Being a Successful Patient is to Know How to Get on Your Doctor’s Nerves and Feel Good About It”.
The Chair of HNF Centers of Excellence speaks out on knowledge gaps among health care professionals, how to identify providers that are well versed in CMT, what patients should expect from their providers, and how they can advocate for themselves or loved ones.
3:45pm – 4:25pm:  Panel Discussion: “Participating in a Clinical Trial: The Good, the Bad and the Benefits”
Now is an exciting time! Finally there are clinical trials for CMT, but what does that mean for you? You need to know the facts.
4:30pm – 4:45pm: Speaker: Pharnext SAS “Pharnext Update on Phase 3 Clinical Trial of PXT-3003″
Hear the latest on this exciting new potential treatment for CMT1A.
4:50pm – 5:20pm: Speaker: Robert Moore, husband to Founder/CEO of HNF “The High-arched Foot: This is the Beginning? The Disease Awareness Challenge”
Robert knows all too well the ins and outs of CMT/IPN’s. Over 90% of patients with CMT have a high-arched foot. Can this be the solution to the awareness problem?
5:20pm- 5:30pm: Closing Remarks
5:30pm – 7:30pm: Poster Session & Evening Reception