Charcot Marie Tooth Awareness Month- Take The Challenge

WOW!!!! So far September has kicked off to a great start.  Between the article in the Cross Timbers Gazette, the article on National CMT Resource Center, posting posters in local doctors offices and getting ready for the Cotton Patch Challenge my head is spinning!


We also have decided to have a booth at the Marcus 2 Cross Country Invitational on September 24th.  We will be passing out information on CMT, selling Carter's Challenge bracelets, giving out CMTA bracelets n t-shirts, all to raise awareness for Charcot Marie Tooth Disease and the CMTA. 

I also will be working with local businesses to raise awareness for CMT.  Some of them are willing to help not only raise awareness but raise funds as well for research and one day a cure! 

I WANT YOU ALL TO KNOW IF I, A STAY AT HOME MOM OF 4, CAN RAISE A BIT OF AWARENESS THEN U CAN TO! 

I CHALLENGE EACH AND EVERYONE OF YOU TO DO ONE NEW EVENT, FACEBOOK POST, EMAIL, LETTER, NEWSPAPER AD, RADIO....SOMETHING BY MONDAY SEPTEMBER 30TH.

EACH INDIVIDUALS EFFORTS NO MATTER HOW SMALL CAN BRING US ONE STEP CLOSER TO A CURE!

SO PLEASE TAKE ON CARTERS CHALLENGE AND MAKE A DIFFERENCE TODAY.   STAY STRONG, BELIEVE!

UNTIL NEXT TIME..........U CAN MAKE A DIFFERENCE!

Charcot Marie Tooth Awareness Month Is Here!

Tomorrow is September 1st and the start of CHARCOT MARIE TOOTH AWARENESS MONTH!!!!!
I know a lot of us have been so busy getting ready to raise awareness. I wanted to say some shout outs to some very special people who I think do an outstanding job raising awareness for Charcot Marie Tooth Disease. 

• Kaitlyn and Lori Mattheis with Mission Happy Feet.  This mother, daughter duo do such a great job getting the word out by making bracelets with feet on them, blogging, holding events, making videos and more! Way to go guys!
• Elizabeth Ouellette with Charcot Marie Tooth Association. I don't even know where to begin...She does it all! Videos, school events, public speaking, fundraising, and the list goes on.  She volunteers for the CMTA and gives it everything she's got! Kudos Elizabeth!
• Melinda Lang with Living Well With CMT.  Melinda has done some amazing things for CMT. Not only does she blog about it and hold fundraisers but she also received a CMT Awareness Month  proclamation from the State Of New York and the City Of Albany!!!! Way to raise Awareness!
• Carol Liu with National CMT Resource Center. Wow this is all I can say about Carol.  She like Elizabeth seems to do it all.  Blog, tweet, editor in cheif for HNF, attorney, mom, oh and yeah wrote Arlene On the Scene.  Like I said WOW! 

I could go on and on about people from all over raising awareness and funds for CMT.  People posting on Facebook, tweeting, blogging and fundraising.  We all are stepping up to plate to help everyone who is affected by Charcot Marie Tooth.  I APPLAUD EACH AND EVERY ONE OF YOU! 

I have made some great friendships so far in this journey, friends from all over the world!  The CMT community is AMAZING!  To my new friends Carly Andrews, Melissa Wilson Arakaki, Melissa Lykins you all have been a great support and have done wonderful things for CMT.  Keep up the outstanding work!

Until Next Time.............."STAY STRONG, BELIEVE"

Having Wonderful Doctors Who Support You Make Having CMT Easier

Today Carter went in for his checkup with his regular Pediatrician, Dr. Debra Naylor with 18 and Under MD.  The good news is he gained some of his weight back!  Yeah! Still not where we are supposed to be but I'll take it.  Dr. Naylor did her checkup and said he seems to be doing well.  She just wanted to take blood again to check his white blood count, liver and other markers to make sure that everything is back down to normal.  Crossing my fingers right now......

When we were in with Dr. Naylor she asked Carter about Carter's Challenge.  She heard about it from one of the other doctors in the office, Kim Bookout.  Who had learned about from me on Ayden's last checkup. She told us that she would love to support us by letting us put up brochures or flyer's about Charcot Marie Tooth in the waiting rooms.  She also suggested that we put our bracelets out there too!  Oh and she bought one from us! I actually didn't have any on me so she took mine!  Then before we left she grabbed Paul, the doctor who caught the CMT, and he bought Carter's bracelet!  They took the bracelets right off of us!  What awesome support!  

Having a disease and having children with a disease is difficult, time consuming and hard work.  The one thing I can tell all of you, is having great pediatricians makes all the difference.  Dr. Debra Naylor, Kim Bookout and Paul Boerger have been so incredibly supportive, helpful and caring during our journey. A doctor can have knowledge on the disease, but a real healer not only has knowledge but compassion.  I feel truly blessed to have such wonderful doctors taking care of our children. 

I hope that all of you have wonderful doctors like us.  To learn more about 18 and Under Md check them out at www.18andundermd.com.  You just may see Carter on there one day.....Another way they are thinking of supporting us!

Until Next Time.............Having the right doctor can make a world of difference!
"Stay Strong, Believe"~Carter Hayes 




 

Charcot Marie Tooth Association Is Making Carter The October Youth Spotlight!

We just got the official word that Carter will be the Youth Spotlight on the CMTA's Youth Facebook page, for October!  He is so excited and so am I!  I know they are excited to have him too.  This is a great opportunity for Carter to tell and show other youths to stay strong, positive and believe.  His motto. Don't give up! I was told that a PR person will be contacting us soon to go over everything.  CAN YOU SAY AMAZING?

My head is still spinning from everything that is going on in our lives right now, but I know now more than ever that this is our calling.  He and I are supposed to shed  light on the Charcot Marie Tooth Disease and make more Doctors, nurses, moms, dads, teachers, communities,etc..aware of CMT  and know the signs.  So many have never heard of it or if they have, they don't know much about it.  Remember, knowledge is power and power is knowing.  THE TIME IS NOW....TIME TO TELL EVERYONE ABOUT CMT!

So go check Carter out on the CMTA's Youth Facebook page in October https://www.facebook.com/#!/CMTAssociation?sk=app_6009294086.  I will of course remind you all when we get closer to October but just couldn't wait to share the great news. 

Until Next Time..........You Can Achieve If You Believe!

Stay Strong, Believe~Carter Hayes