We are Truly Blessed!

You never know when things are bad who is going to stick it out with you.  Will friends stop calling or stopping by?  Or will they be your guardian angel and guide you through the rough rode ahead? 

I have found that over the past couple of weeks and days that we are truly blessed to be surrounded by such wonderful people.  I MEAN IT FROM THE BOTTOM OF MY HEART.  There are teachers, nurses, friends, Cross Country moms and even my dentist just to name a few.  Each and everyone of you deserve a big THANK YOU. 

To Zach's 3rd grade teachers Ms. Hampton and Ms. Phillips you both are amazing teachers and people.  Zach was so blessed to have you both in 3rd grade.  I want to thank you for reaching out to us and assuring me that Zach would be well taken care of at Flower Mound Elementary.  I know he will be because he has the two of you on his side. 

To Dayne our fearless Cross Country Parent Leader.  You amaze me at how much you accomplish during the year and how dedicated you are to the team and their parents.  Thank you for your support and for spreading the CMT news.  We were so blessed to be a part of such an amazing, caring, loving and fun team.  There simply is no other team at Marcus High School nor in the world, that could hold a candle to our team.  From the kids, to the parents, managers, volunteers, to Coach T and Coach Brevard you all make it such a joy to be apart of the team.  We will miss each and every one of you! Even though Carter cannot compete we will still attend meets to cheer you all on.  You will always be in our hearts and prayers.  Thanks again for sending out an email and we would be honored to have you guys help us in anyway.  We will always be a part of the CC family!

Last but not least Kristi Steele and Jo Beth Tagaras,
There are acquaintance's, there are friends and there are great friends but every once in awhile you get the cream of the crop.  Yes ladies, you are the Creme De La Creme of friends. Kristi, you my dear, I really don't know what I would have done over the last couple of months without you.  You have been there for me more than anyone!  Carter loves being a part of your family and I appreciate you picking him up and dropping him off on such short notice!  JoBeth, you are an amazing friend and I love how I don't even have to ask for help, you just jump right on in.  Like the time I saw you at Target, I had to leave to get Carter suddenly and you brought my groceries!  I owe you big time!   You have such a big heart and beautiful soul.  Your fundraising ideas are awesome and I would have never of thought of them.  Thank you ladies for being such a big part of our lives.  I guess I need to thank our kids for being friends and the Cross Country Team for putting us all on the morning breakfast crew!  LOVE YOU GUYS SO MUCH!

Thank you again to each and everyone of you. Family-you know how I feel about you all! xo

Until Next Time..............MAY GOD BLESS EACH AND EVERY ONE OF YOU!
Michelle
"STAY STRONG, BELIEVE"~Carter Hayes

Recommended Supplements for CMT

Just thought I would share this articl with everyone.  Good information!

Dr. Gregory Carter (CMT expert at U of Washington in Seattle) recommends the following supplements to persons with CMT.
Multi-mineral vitamin
5HTP (with cautions) (anti-depression and sleep–aid)
L-glutamine (skeletal muscle health)
L-Taurine (skeletal muscle maintenance)
L-leucine (increases the synthesis of muscle proteins)
L-methionine (amino acid)
L-tyrosine (for energy)
L-theanine (muscle spasms/twitching)
Ester C (Ester-C® Calcium Ascorbate is a unique and patented form of vitamin C. It is made using a proprietary, water-based manufacturing process which results in a pH neutral product that contains naturally occurring vitamin C metabolites. These metabolites activate the vitamin C molecules making it easier for the body to transport them from cell to cell for numerous health benefits.)

Calcium (Calcium is an essential dietary element, a constant blood calcium level being essential for the maintenance of the normal heartbeat, and for the normal functioning of nerves and muscles. Calcium ion is essential in a wide variety of important physiological processes, including muscle contraction, neuronal excitability, neurotransmitter and hormonal release, membrane integrity and permeability, signal transduction, enzyme function, and blood coagulation.)
Magnesium (An essential element which influences many enzymes needed to produce cellular energy and nerve and muscle message transmission. It affects nervous, muscular and cardiovascular systems. Magnesium is the fourth most abundant mineral in the body and is essential to good health. In humans it is found in bones, teeth, and red blood cells, magnesium activates many enzyme systems (such as those involved in protein digestion and energy production).
Zinc (protects against premature aging muscles of the body)

Resources: CMTA

Cotton Patch Challenge

Carter's Challenge presented a challenge to all of you the other day.  We asked you to email or tell 5 people about this website. Did you tell or email 5 people?  Let us know by leaving a comment or email us. 

Carter's first road race will be taking place on September 17th and 18th.  He will be racing in the Cotton Patch Challenge in Greenville, Tx.  The race begins at 7:55 am and is 31 miles long!  Carter is so ecstatic about racing in his first race, his birthday week and when his Nana is in town.  We would also like to invite all our friends and family to come cheer Carter on in his first race. 

Carter has been training pretty hard for this race.  He tries to cycle for 1-2 hours a day right now.  He is not training outside since it is 105-111 here in Texas!  The heat is just too much and we don't want him to get dehydrated or heat exhaustion.  We have an indoor trainer that allows Carter to ride his bike inside and he can watch t.v. while riding so that is a plus. 

So far Carter has done very well with his training on the bike.  He hasn't had too much pain just every now and then he will get it in his knees, but his feet aren't bothering him at all!  He of course is fatigued when he is done, but that is expected since fatigue is a huge problem with CMT patients.  Plus riding for 1-2 hours can wear you out.  Overall, he feels good when he is on the bike. 

Please feel free to leave some encouraging comments for Carter to help him get through his training for the race.  To all our CMT friends we have a question for you.  Have you done a cycling race before?  If so tell us about it we would love to hear about your experience and any tips you may have.

Until Next Time......................"Anything is possible.  You can be told that you have a 90-percent chance or a 50-percent chance, but you have to believe, and you have to fight." ~Lance Armstrong

Great News Just Keeps On Coming!

First of all I want to say Thank You so much to everyone who is reading this blog!  Thanks for all the great emails that let us know you are thinking of us.  Carter looks forward to reading the comments on the blog and checking the emails everyday, so keep them coming! 

Sean's boss, Kirk at Bob Moore Subaru, called him tonight and told Sean he just received an email from his friend, who is the head legal counsel for Scottish Rite here in Dallas.  The email stated that Kirk's friend's application for their two kids was reviewed today and IT WAS ACCEPTED!  Yep, thanks to Kirk and his connections and Kim Bookout, our wonderful Pediatrician at 18 and Under MD, we got into Scottish Rite in record time!  We should be hearing from them shortly! I cannot tell you all how much this means to us.  We were so worried that we would not get in and that it would take a long time to hear from them. Now we don't have

I am sooo happy and excited!  The last two days have been filled with such great news and I truly believe God is just watching over us right now.  We are truly blessed to be surrounded by such incredible people.  As soon as we here when our first appointment is I will let you all know.

Until Next Time.................THANK YOU EVERYONE!

Detroit Here We Come!

So today on my to-do list was to call Lisa at Dr. Shy's office at Wayne State University in Detroit, Michigan.  See Dr. Shy is a Professor of Neurology and Molecular Medicine and Genetics and is known around the world as the best CMT doctor.  People travel from all over the world to be evaluated at his one of a kind CMT clinic.   

The CMT clinic is set up as a multidisciplinary team, consisting of a neurologist, electrophysiologist, genetic counselor and physiatry specialists.  They assess each patient clinically but also collect data for research to help develop new ways to treat CMT and ultimately find a cure.  

Wayne State CMT Clinic is the lead clinic in research and is currently one of three sites doing a clinical trial for CMT 1A on High Dose Ascorbic Acid.  They have received numerous grants from the National Institutes of Health, Charcot Marie Tooth Association and the MDA just to name a few.  This allows them to provide free clinics to families with CMT. YEP FREE!  They bill your insurance and then you don't have to pay the rest! 

Thanks to Jeanna Sweeney giving me the number to contact I was able to talk with Lisa, who assist Dr. Shy at the CMT clinic today and she said they would love to see they boys!  I almost started bawling on the phone with her but I didn't want to miss any information she was giving me.  So on DECEMBER 15TH 2011 WE WILL BE GOING TO DETROIT MICHIGAN!  COME H*** OR HIGH WATER!  This was what she had open and I said absolutely without even thinking twice about it. 

I am soooo excited and soooo thankful that Carter and Zach will have the opportunity to be seen by the best of the best Doctors on CMT.  God is truly blessing us right now. 

So now I have to find out how me and the boys are going to get there but I know it will happen somehow, someway. 

Until Next Time.................DETROIT HERE WE COME!

THE TIME IS NOW! JOIN US FOR SEPTEMBER CMT AWARENESS MONTH

The end of Charcot-Marie-Tooth disorder begins with me. Activate. Educate. Donate. I am a part of the CMTA.

TODAY'S CHALLENGE IS EMAIL AT LEAST 5 FRIENDS OUR BLOG ADDRESS

http://www.carterschallenge.com/ TO RAISE AWARENESS FOR CMT.  HELP US FIND A CURE BY RAISING AWARENESS.

STAY TUNED FOR MORE INFO ON WHAT WE ARE DOING NEXT FOR CARTERS CHALLENGE!

It Takes One Teacher In A Child's Life To Make A Difference!

What an amazing day today.  I never expected that today would be such a life changing day for Carter, but it did.  This is all due to ONE AMAZING TEACHER- COLONEL SAYLES at Marcus High School in Flower Mound, Texas.  As many of you know, Carter was in his High School's JROTC program and was looking forward to becoming a Navy Seal.  All this changed when he was diagnosed with CMT.  We went up to the school today to get his form for his permit to drive.  When we arrived we bumped into his JROTC friends, who were "training" the new recruits.  They all came running over and said "I am so sorry man to hear what happened."  Carter told them all "Its o.k. I'll still come visit you all."  After our goodbyes we went into the office to pick up the form and I could tell as he was signing it he was upset.  He said "I didn't realize how hard this was going to be."  He was talking about going back to school and being around all his friends that are doing everything he used to do but can no longer do.  I told him "I know honey, I know it's hard but we will get through this."  As we left we decided to stop in the class and inform Colonel that Carter is no longer going to be in JROTC. 

When Carter told Colonel "I am here to tell you I am leaving ROTC."  Colonel said "What? No you aren't. Why would you leave?  This is what you have always wanted. You are not leaving!"  We then explained to him that Carter was diagnosed right after he came back from ROTC Leadership camp with CMT. I explained what the disease was and how Carter can no longer stand for long periods of time due to severe pain, run due to pain and fatigue and that he just simply cannot handle some of the rigors of ROTC.  Well lets just say that Colonel was not letting go of Carter that easily.  He said "I am not letting you go, I want and need you to stay.  You are my leader, I need you!"  "You see all those Freshman out there?"  "I need you to lead them."  "ROTC is not just about joining the Military, it is about leadership, teamwork, and family."  "I will make accommodations for you so you don't have to march or do drills." He went on to say that Carter can take on more of a leadership role, since he went to leadership camp and administrative work as well.  He will teach him how to put stuff into the computer, he can time the PT guys and so much more.  He kept telling him I need you and I am not letting you quit!  I started to cry and everyone had tears welling up in their eyes.  Going above and beyond Colonel also said that he can help us with fundraising!  Even better he told  Carter he could become a government contractor to do Military analysts or a strategist for the SEALS and he would help him with this. .

 In my opinion Marcus High School should be honored to have such a great teacher leading their kids and the government should be proud and honored to have him as well.   TODAY COLONEL SAYLES MADE OUR DAY!  What started out as a sad day ended on such a high note!  All due to one teacher, taking the time to care about one student and not giving up on him!  Instead, inspiring him, teaching him, believing in him and telling him you are special. 

THANK YOU COLONEL SAYLES for making this year a better year even before it starts.

Oh and at the end he said "So tomorrow I expect you here at 7 am in your BDU's."  "Yes Sir" said Carter. 

This is from the NY Times great info!

http://well.blogs.nytimes.com/2011/03/31/the-voices-of-charcot-marie-tooth/

Health

Well: The Voices of Charcot-Marie-Tooth

By By TARA PARKER-POPE

Published: March 31, 2011

People with the neurological disorder called Charcot-Marie-Tooth must not only contend with pain and muscle weakness, but also the frustration of having a disease with a funny-sounding name that most people have never heard of.

Mice Point to a therapy for Charcot-Marie Tooth Disease

http://www.eurekalert.org/pub_releases/2011-08/vfi-mpt080211.php.248.233.147

VIB researchers have developed a mouse model for Charcot-Marie-Tooth (CMT) neuropathy, a hereditary disease of the peripheral nervous system. They also found a potential therapy for this incurable disease. The treatment not only halted the damage to the nerves and the atrophy of the muscles, it even succeeded in reversing the symptoms. The research was conducted under supervision of Wim Robberecht en Ludo Van Den Bosch from VIB-K.U.Leuven, in collaboration with the team of Vincent Timmerman at VIB-University of Antwerp. The study was published in Nature Medicine.
CMT: a collection of neuropathies
Charcot-Marie-Tooth (CMT) disease is the name for a collection of hereditary disorders and affects approximately one in 2,500 individuals, making it the most common inherited disorder of the peripheral nervous system. CMT is characterized by loss of muscle tissue due to denervation and by sensory abnormalities, both predominantly in feet and legs but also in the hands and arms in advanced stages of the disease. Persons with CMT can be affected moderately to quite severely. It is presently not possible to cure or prevent CMT, which affects both children and adults. Research into the molecular biological process leading to CMT is important, because it contributes to the development of good diagnosis and offers possible treatments.
Earlier work by VIB researchers showed that some CMT patients have mutations in HSPB1, a gene coding for the 27 kDa small heat shock protein B1, a protein that plays a role in many stress-related molecular processes in the body. Until now, it was unclear how mutations in HSPB1 could lead to degeneration of the nerve bundles and to muscular weakness.
Mouse model for CMT
The core of the study by Constantin van Outryve d'Ydewalle consists of the construction of a mouse model for CMT. The researchers expressed the mutated human HSPB1 gene in mouse neurons. The mouse model develops motor symptoms, muscle atrophy and weakness, foot deformities and steppage gait, all very similar to symptoms observed in affected individuals. Furthermore, the mice develop sensory problems that also occur in CMT patients. Pathological examination of the nerves of the CMT mice shows that the contact between the nerve endings and muscles is disturbed.
Axonal transport deficits
The CMT mice provide the unique possibility to isolate and culture affected nerve cells, making it possible to investigate what exactly goes wrong in the sick nerves. It was discovered that the transport of mitochondria (the cellular power plants) within the axons is severely disturbed in the neurons from symptomatic CMT mice, most likely because the tracks along which the mitochondria are transported (microtubules) are damaged. This could lead to a chronic lack of sufficient mitochondria and other transported cargoes at the nerve endings, causing the nerves to degenerate.
Possible treatment of CMT by HDAC6 inhibitors
These new insights also open possibilities for treatment, because the mitochondrial transport in nerve fibers is known to be affected by tubulin deacetylation, a posttranslational modification of the building blocks of microtubules catalyzed by histone deacetylase 6 (HDAC6). Inhibitors of HDAC6 do not only reverse the axonal transport deficits in vitro, treatment of the CMT mice with HDAC6 inhibitors also halts the damage to the nerves and even succeeds in reversing the symptoms, most likely by muscle reinnervation. The most specific therapeutic molecule used in this study (Tubastatin A) was made by Alan Kozikowski from the University of Illinois at Chicago (USA).
Mouse medicine is not the same as human medicine
There is still a long way to go before these drugs will become available for patients. Many experimental drugs – even those that are successful in animal models – fail during clinical trials due to problems with safety or the lack of therapeutic effectiveness. Still, the results of this study are important not only because of the CMT mouse model that replicates the symptoms of the human disease; it also opens perspectives for possible new treatments of an incurable disease.
Other diseases?
Reduced axonal transport in neurons is also observed in other neurodegenerative or neurological diseases, opening the door for further investigations into the effects of this new therapeutic strategy in other diseases. Further scientific research is crucial to solve this issue.

Dr. Shy explains:

"This work was actually presented at the CMT Consortium in Maryland last month.  The only thing is this  for a rare form of axonal CMT CMT2F. EVENTUALLY, this type of therapeutic approach will be tested in this particular form of CMT. Whether the therapy will also be tested in other forms of CMT2 or other forms of CMT is only conjecture at the moment. Vincent Timmerman, who is involved with the CMTA and the CMTA's STAR initiative is involved in this work."

resource for article http://www.cmtausa.org/