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Monday, July 30, 2012

Research Update from Team CMT member Dr. Bob Chetlin

Team CMT member Dr. Bob Chetlin



CMT Athletes, CMT Patients, CMT Families, and the CMT Community:

My name is Robert Chetlin. I am an associate professor in the Department of Human Performance and Applied Exercise Science in the West Virginia University School of Medicine. I also hold an appointment in the Department of Neurology at the same institution. For approximately the past 15 years, I have dedicated a significant portion of my time to study the effects of exercise in persons with CMT. Although you do not know me, I have been a supporter and member of Team CMT since its very beginning.

Many of you personally appreciate the benefits of exercise and provide testimonial that regular exercise helps maintain your strength, your endurance, your ability to carry out daily activities, and your quality-of-life.

Some studies we have done provide clear evidence that the muscle of some CMT patients beneficially responds to an exercise stimulus by increasing muscle size (called hypertrophy) and activating some of the proteins known to control muscle growth.

In CMT patients capable of exercise participation, regular exercise and activity reduces the risk of disease associated with a sedentary lifestyle, including type 2 diabetes and heart disease.

In fact, many governmental and non-governmental agencies, namely the United States Department of Health and Human Services, the Office of the United States Surgeon General, the American Medical Association, and the American College of Sports Medicine, all agree that children and adults with chronic disease and disability, whom are capable, should engage in regular forms of exercise and activity. By definition, this would include a very large segment of the CMT patient population.

Despite the official position statements of these multiple nationally and internationally recognized and respected organizations, very few studies (less than two dozen), historically, have examined the effects of exercise in patients with various forms of CMT. As many of you are likely aware, the vast majority of CMT research has, up to this point, focused on discovery; that is, finding out about new types and subtypes of CMT and creating animal models of CMT. Though this type of science, called basic science, is valid and intriguing, CMT patients express little enthusiasm for these types of studies, because it is difficult to see the direct utility and benefit to patients themselves.

When patients I work with ask me how basic science will improve their daily lives, I am literally at a loss for words to provide an adequate explanation. It has been my experience that there exists a very palpable frustration amongst CMT patients today that the scientific community is so enamored with discovery that direct physical (non-surgical) treatment for patients has been relegated to a lower tier of importance. Other (non-physical) interventions have been attempted, namely drugs and nutritional supplements, but these have all failed to demonstrate long-term treatment effectiveness.

A thorough review of the scientific and clinical literature indicates that no drug or nutritional supplement, administered alone or in combination, has effectively treated or cured any degenerative and/or progressive neuromuscular disease or disorder, including CMT – perhaps the most complex and enigmatic neuromuscular disorder known to medical science.

So why haven’t more studies been done to determine precisely how, and for whom, exercise may ultimately benefit CMT patients?

Quite simply, money; comparatively speaking, virtually all public and private funding has been devoted to the basic science of CMT. The result has been fewer physical interventional studies (including exercise), and the generation of smaller amounts of evidence to support regular exercise for capable CMT patients. In addition to defensive medicine, this “lack of evidence” is often cited, anecdotally, as to why many medical professionals advise against regular exercise and activity participation for their CMT patients.

Are there any circumstances or developments that promote a greater emphasis on studies that directly and comprehensively examine the effects of exercise on CMT disease?

Thankfully, that answer is “yes”! This is one of the reasons I have offered to write this narrative: to inform you about some exciting work and promising research on exercise and CMT.

A consortium of basic and clinical scientists has been formed between the National Institute for Occupational Safety and Health (NIOSH), the Max Planck Institute for Experimental Medicine (Gottingen, Germany), and the West Virginia University School of Medicine.

We propose to initially utilize experimental animals genetically modified to have CMT1a (the most common form of CMT), developed at the Max Planck Institute, by exposing them to a very controlled resistance-type exercise program on a machine called a dynamometer, developed at NIOSH. Upon completion of this validated animal exercise protocol, we will examine changes in the proteins, genes, and biochemicals associated with the nerves and muscles of the trained animals, as well as their strength and performance, and compare such change to non-exercising CMT control animals. We will be able to determine the precise effects of exercise from the genetic level to the performance level.

This research model will also allow us to: go back and better refine the exercise program; test animals with other forms of CMT (such as CMT2), and; include drugs or gene therapies with exercise, or both, to determine if the combination of drugs/gene therapies and exercise is more effective than any of these treatments administered alone. Ultimately, this body of evidence will be used to formulate an intervention strategy to be tested in human patients with CMT during Phase II of our research. Phase II will include studying a wide range of the CMT population: from those CMT patients wanting to increase their functional ability and improve the quality of their lives; to CMT athletes training to improve competitive performance, with or without a sport version of the Helios bracing system.

The collaborative, seminal (foundational) research just described is being made possible by the generous support of the Hereditary Neuropathy Foundation (HNF) and Team CMT, a group of CMT athletes and exercise enthusiasts, who, through athletic competition, raise the funds needed to drive this translational project.
Now, what can be done to support this novel research?

Everybody affiliated with the CMT community can help. If you are an athlete or exercise enthusiast with CMT, join  Team CMT and fundraise; the money you raise through athletic competition will go directly toward the described exercise research. If you are a patient with CMT, have a loved one with CMT, or are otherwise involved in the CMT community, join HNF and donate whatever you can; indicate that your donation go directly to support CMT exercise research.

Lastly, here is my pledge to you: I will make myself personally available to answer whatever questions you may have regarding the information provided and what the future of CMT exercise research may hold. Most scientists wouldn’t think of doing this, but changing the direction of CMT research is so profoundly important, I am willing to talk to you directly about our hopes and aspirations. I would also be happy to pass along any questions you may have for our collaborators at NIOSH or the Max Planck Institute for Experimental Medicine. Feel free to e-mail me at: rchetlin@hsc.wvu.edu.

Thank you for taking the time to read this.

Most Sincerely,

Robert D. Chetlin, PhD, CSCS, CHFS
Associate Professor
Department of Human Performance and Applied Exercise Science
Department of Neurology
West Virginia University School of Medicine
PO Box 9139
Morgantown, WV  26506-9139

Tuesday, July 17, 2012

Racing Tips for Newbies


Many of the new athletes to the team are asking about doing races. Doing your training is an important part of your preparation, but not the only part. Racing can be a fun experience. To be sure things go smoothly the day of the event you want to keep a few things in mind to make sure everything goes smoothly:

Location
Do you homework and get directions to the venue. Give yourself plenty of time to arrive at the location and park your car. Sometimes directions are wrong on event web sites so give yourself plenty of time on race day.

Pick up your race packet early.
Pay close attention to pick up times and location for your race packet.  If you like to sleep in on race day pick up your packet in the days before the race. Some marathons do not have pick up on race morning so check pre race instructions carefully. It you are picking up your packet the day of the race get there early. Most pick-up ends 15-30 minutes before the event. Get there early enough to take care of any problems with your registration, it does happen. Also be sure to pick up your timing chip.

Race Number
Wearing your number wrong will point you out as a newbie. The number goes on the front of your shirt. Lots of new runners make the mistake of pinning it to the back of their running shirt.  Many races now have professional photographers on the course. If you want to find your pictures you need your number on the front. Race officials also ask for you to have you number in the front so they can identify you.

Wear tried-and-true running apparel.
Of course if you are a Team CMT member you will wear your Team CMT gear. But your friends running with you may not be so lucky to be a member. You can pass these tips on to them.
It is considered among runners bad luck to wear your event shirt in the actual event.  It is considered cool to wear that shirt at another event or last year's shirt at the race.   The cotton shirts often given are not good for anything longer than a 5 K or during hot humid weather.  Never wear brand new gear on race day. Try out anything you will be wearing in workouts. Race day is never the time to sport new shoes. Break in your shoes by walking in them for a day, and then wear them for at least a few workouts. The longer the race the more important it is to have on well tested gear.  If doing a half or full marathon you don't want to discover a chafing seam 2 miles into the race.

Try to get a good night’s sleep.
A good night’s sleep will make your feel better on race day and help you perform better. Expect to be nervous and lose some sleep before the big event. You will still be OK if you got good sleep the rest of the week. I have only slept once before any of my marathons or half marathons. I can attest you can still run well on very little sleep. Be sure to get as much sleep as you can the nights leading up to the event.

Fuel your body.
Stick to the type of food you ate during training. Pasta with veggies is good, but go easy on the cheese.  Be sure to stay away from alcohol and drink plenty of water the day before the event.
It is very important to eat breakfast. Experiment with what works for you and stick with it on race morning. Oatmeal, yogurt, bananas are all good choices.  Find out what will be offered on the course for sports drinks and gels and use them in training. If you don't like the choices carry your own. I often carry a bottle or my camel bak with accelerade or exceed which are my sports drinks of choice.


Hydrate
Drink some water first thing in the morning when you wake up.  The amount you take will depend on you, the race length and the weather. A few ounces at each aid station are good. Do not over do the water.  Drink when you work out and you will know how much fluid your body needs. The right amount of water will also help in your recovery.  Drink water after the race and stay away from alcohol at least for a few hours.

Starting Line
Seed yourself appropriately based on your training runs and past races.  Most races have projected per minute times posted. Please don’t line up near the front and make runners pick around you so they can run. Be considerate. If you are a middle of the pack runner, line up in the middle.  Race times are based on chip times now, so the clock doesn’t start until you hit the mat at the starting line. No need to line up too far in front. Time yourself during workouts so you know your pace.

Pacing
Most beginning racers make the mistake of going out way too fast, and then die in the last miles. Go out conservatively. Hold back a bit to warm up. Go out within your ability and you will be passing lots of runners in the last mile. Aim to run a second half of your race that is faster than the first half.

Have Fun
Try not to think about how far the run or swim or bike is.  Smile and take in all the sensations. Look at the crowds, listen to the cheering and have a great time. You are living a healthy life style and creating lasting memories. Join the party at the end of the race. Every event has a post race party. Catch up with friends and see how everyone did. And remember to get some photos in your Team CMT gear to share with everyone.

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


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

 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.




 

Sunday, July 15, 2012

Join Team CMT in Richmond

Team CMT members Kim Farren, Courtney Hollett and Barb Vonada at Richmond 5K



Join Team CMT in Richmond on November 10, 2012.  Barb Vonada, Kim Farren, Courtney Hollett and Chris Wodke will be running events. Last year Team CMT members Pat Jett,  Richard and Ruth Cook and Katie Ayala also ran and hope to see them there again. Richmond Team CMT members have been hosting a running group on Saturdays to get ready or this event. They have been training and running in events all summer. I am really looking forward to meeting them!  They look great in their Team CMT singlets!

This would be a great event to pick for a destination race. I did that last year running a half marathon in Iceland in August,  and The Marine Corp Marathon in October in D.C.

I've also done a sprint triathlon in Denton Texas and Nationals in Austin.  It's fun to travel to an event and meet other Team CMT members. They're awesome people!  We all share the same goal for sports, raising awaress of Charcot-Marie-Tooth Disorder and raising funds for research.


There are three events to choose from

Anthem Richmond Marathon- 8 am start
American Family Fitness Half Marathon- 7:30 start
HCA 8K- 7:00 am start



Entry Fees:

Enter By:
Marathon
Half Marathon
8k
Through December 31, 2011
$70
$60
$25
January 1 - March 31, 2012
$75
$65
$25
April 1 - June 30
$85
$70
$25
July 1 - September 30
$95
$80
$30
October 1 - November 7
$110
$90
$35
Walk Up on November 8-9 (at the Expo)
$120*
$100*
$45*
*Walk up registration at the Race Expo will only be available if the race you want to run has not reached its 7,500-person capacity.
Pasta Dinner: $30 (Reservations Close Oct. 31, 2012)
THERE IS NO RACE DAY REGISTRATION or PACKET PICK UP



Race

Richmond has a scenic course winding through its most scenic neighborhoods with a down hill finish to the waterfront.  There will be on course support including live bans, spirit groups and party zones. Our own HNF will be manning one of the cheer zones to cheer on Team CMT members.  Unique features of the race include junk food stops and wet wash cloths.  At the finish you will be greeted with pizza, beer and a massage.



Perks

All runners will get a technical tee shirt and finisher medal.



Awards
You can even vie for prize money. Cash is given to the first 5 overall finishers male and female.  Awards for age groups go five deep.

Place
Prize
1
$1,000
2
$500
3
$250
4
$150
5
$100

Overall awards are determined by clock time; age group awards by chip time. Cash awards go to the top five overall finishers, male and female. Additional awards will be presented to the top five in all age groups in all races. Age groups are: 9 & under*, 10-14*, 15-19, 20-24, 25-29, 30-34, 35-39, 40-44, 45-49, 50-54, 55-59, 60-64, 65-69 and 70-74 and 75 & up. (*8k only)

The Awards Ceremony for overall winners in each race will take place in the finish line area immediately after they have all completed the race. Age group winners in all 3 races will be mailed their awards after the race.

The Marathon course is certified as a Boston 2012 qualifier.



Post Race HNF Party
There are also plans to have a post race HNF party. This will be a great way to meet some other Team CMT members. If you don’t want to run, come and cheer those of us running. Join HNF President Allison Moore in the cheer zone. It means so much to the runners to have the encouragement.




Chris Wodke
Founder & Manager Team CMT
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

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.

Friday, July 6, 2012

Iron Man Joins Team CMT



Shaun Daily from Quest Magazine 2008


" The difference between the impossible and the possible lie in a man's determination." -Tommy Lasorda

When I was diagnosed in 2010 with CMT, I thought I was one of the only athletes out there with CMT. That belief was re-enforced by medical professionals and the CMTA.  They only knew about Donna and then me.

What a joy it has been to find 20 athletes of all abilities around the country with CMT.  Our newest member is training for an Iron man Triathlon. Shaun has shown unbelievable toughness and determination.  I first became aware of Shaun when I read an online article about him on the MDA site.  Check out his full story at http://quest.mda.org/article/i-want-run.

Shaun has known about his CMT since he was a young child. He shares CMT with his mom and sister. As a kid he couldn't run.  His mom felt guilty for giving him CMT, but Shaun's determination to be active and his positive attitude lifted that burden from his mom.

Many years ago he was asked to participate in a relay triathlon with his leg being the swim.  He did the swim but wanted something more. He wanted to run. He searched for another athlete to help him but met with a dead end. Glad you found us now Shaun.  You are not alone.

He designed his own special orthodics with the help of a friend and his own study of anatomy and bio mechanics.  Check out the orthodics he designed to help mimic a normal running gait.


With his adapted shoes he was able to run for the first time since grade school. He wanted to show his mom so she did not have to feel guilty any longer about passing on her CMT to Shaun.  He wanted to show her in a dramatic way so he signed up to do a sprint triathlon.  During training Shaun would get choked up just thinking about crossing the finish line. I know how you feel Shaun because I still get emotional when I remember training for and then finishing the Boston Marathon.

 With only 3 months of training he ran an emotional three miles surrounded by family and friends.  Now he is training for an Ironman. What an inspiration you are Shaun! 

Shaun also shares the passion about many Team CMT members about raising awareness of CMT. He has taken what his mom thought of as a curse and turned it into a blessing, first to ease his moms guilt and secondly to educate others about CMT.  So proud to have you on Team CMT!

Shaun is married with two sons and lives in Senoia Georgia. He teaches PE and is also an avid motorcycle racer.  Shaun let us know when you run that Ironman so we can celebrate your accomplishment.


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


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.


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.


Wednesday, July 4, 2012

Join Team CMT members for Brewers Mini Marathon


Cheryl Monnat and Robert Kearny at Rock & Sole Half Marathon

Join Team CMT members Robert Kearney, Cheryl Monnat and Chris Wodke at the Brewers mini marathon on Sept 22nd. Hoping other Team CMT members are planning to be there as well. This is a good warm up if you are doing a fall marathon like Robert and Cheryl (Dublin).

Here are the details

What:  Brewers Mini Marathon (Half Marathon)
Location:  start and finish at Miller park with a lap around the field warning track.
Date: September 22, 2012
Time: 7:00

The race proceeds go to MACC (Midwest Athletes Against Childhood Cancer).

There is a key check at the start so you will not have to carry your keys on the course and risk losing them (you know who you are).

You get a finisher medal, ticket to a future Brewers game, a goodie bag, shirt and admission to the post run tailgate party.  Come meet fellow Team CMT members. I bet the racing sausages will be there.  I love them, but they beat me in the 5K sausage race.

Here is the training plan I will be using, so if you have ever been thinking about running longer distance this would be a great race.


Week
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
1
CT
35 min tempo
Rest
5 mi
Rest
7 mi
3 mi EZ
2
CT
6 x 400 IW
Rest or CT
35 min tempo
Rest or CT
9 mi
3 mi EZ
3
CT
35 min tempo
Rest or CT
5 mi
Rest
10 mi
3 mi EZ
4
CT
4 x 800 IW
Rest or CT
40 min tempo
Rest
8 mi
3.5 mi EZ
5
CT
CT
35 min tempo
Rest
9 mi
3.5 mi EZ
6
CT
CT
40 mi tempo run
Rest
11 mi
3 miles EZ
7
CT
8 x 400 IW
Rest or CT
40 min tempo
Rest
13 mi (last 3 at race pace)
4 mi EZ
8
CT
5 x 800 IW
Rest or CT
35 min tempo run
3 miles EZ
Rest
10K race
9
CT
Rest or CT
45 min tempo
Rest
10 mi
4 mi EZ
10
CT
7 x 400 IW
Rest or CT
35 min tempo
Rest
14 mi (last 4 at race pace)
4 mi EZ
11
CT
40 min tempo
Rest
4 mi race pace
Rest
5 mi
3 mi EZ
12
Rest
4 mi
30 minutes 10K pace
3 mi
Rest
20 minutes
Race Day!

Happy to provide coaching or help if you have any questions. I will be biking and swimming on the rest days since I am also in triathlon season. If you are doing the event let me know so we can meet before the race for pictures and after to celebrate our accomplishment!

This is the same training plan I will be using as I join Virginia Team CMT members in November for the Richmond Sun Trust Half Marathon. Will be seeing Ruth Cook, Richard Cook, Allison Moore, Kim Farren and Courtney Hollett.


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com
www.hnf-cure.org

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 20 states. If you wish to join us visit our web site.

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.

Sunday, July 1, 2012

Team CMT Gear


This is the design for the triathlon top.  Also working on designs for shorts and a tri suit.


This is the design for the short sleeve bike jersey. Also requested a design for bike gloved, sleeveless jersey, long sleeve jersey and arm warmers.

I  have asked the company to set up an on-line Team CMT store. I hope to offer hoodies, baseball caps, polo shirts, warm-up jackets and other items. I will let everyone know once the store is set up.

The team members doing triathlons and cycling events have been asking for event specific gear. Sorry it took me so long, but I finally have the ball rolling.

I have also requeted a quote on running singlets and shorts. If you are like me, you need more than one singlet.

Visit Champion systems and if there are items you see you would like me to add let me know.  Go to their Charity section of their on line store and you can see items other teams have chosen. That is where I hope to have us listed.

Chris Wodke
Founder & Manager Team CMT

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

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.