MYOTUBULAR MYOPATHY & CENTRONUCLEAR MYOPATHY

The 2009 MTM-CNM Family Conference was definitely a life changing event.  There were over 115 people in attendance, representing  31 affected families.    It was truly amazing to be gathered there with all of these precious families!! 

The families gathered together, the children played, information was shared, and our lives were touched in an incredible way. I will never forget it!  

For those of you who weren't able to attend, the event was webcasted live.  If you were not able to participate in the live webcast, it is being archived for future viewing. 

The link to watch the live webcast is:

http://video.webcasts.com/events/glow001/31605

It will be ready to view by the end of the day today, August  10, 2009.

Thank you all for your support and participation in this year's event! 

Plans are in order to begin organizing next year's event, as we speak.  We hope to see you there!!

Hi everyone 

For those who do not yet know, active fundraising has begun and the donations are starting to come in.   So far...

-A marathon has been run by the uncle of an affected family member, raising over $500!

-An organization has made a one-thousand dollar donation!

-A couple of local bank employees donated money to the MTMRG!

-A local school's Special Education department took up a collection to benefit the MTMRG!

-An employee at a bank made a contribution to MTMRG and used the Bank's "Matching Funds" program to double the gift to MTMRG!

The Phantom Tea Invitations are at the printer as I type this (the Printer has donated the printing of the invitations!)   As quickly as possible they will be distributed to anyone who would like to participate in this delightful FUNdraiser   

 If we all work together, we will meet our budget goals quickly.  The next step would then be fundraising so we can cut away at family costs like registration fees, etc.     

So far, we have 11 confirmed families who will be attending! Awesome!! 

For the undecided families... I know it can seem daunting, but believe me when I tell you that the hardest part is committing to attend.  Once you have made up your mind to come, the rest of it will work out. 

!'!'! Remember, we are all in this together- if you find a great deal on travel or an easier way to travel, submit it to us and we will include it on the website for all of us to benefit from.  !.!.!

((( Here's a thought:  if all 11 confirmed families raised $500 each through the Phantom Tea, this would raise an additional $5, 500! 
If all 50 families who responded to the survey about this conference raised $500 each through the Phantom Tea, this would raise an additional $25,000! )))

@@@ Anyone interested in helping to plan/organize the conference or  wanting to help out in some way-  we welcome you!  Shoot us an email... mtmfamilyconference@gmail.com or contact us through this website. @@@

~~ Also, anyone who would like to have their family photos added to the slideshow on the home page of the website, make sure to get them sent in by November 15, 2008.  The photos will be gathered and added to the slideshow by November 30, 2008.  PLEASE SEND ALL PHOTOS TO:  kookla_g@yahoo.com   Do NOT send them to the family conference gmail account.  Thank you! ~~

Connie

Alright, I'm back.  I have, personally, had a few setbacks lately (namely one massive hurricane named Ike), but I am back to report the latest: 

1)  It's official.  On Sept 5, 2008, we signed on with the Marriott at Bush Intercontinental Airport!

2)  We have several confirmed speakers/ guests already lined up!  I think I will create a new page with this info...

3)  Our site is officially ready to be sent out to everybody!

4)  We have already had some successful fundraising (way to go, Sarah)!  We are off to a good start- now it's time for EVERYONE to join in

Welcome, to all of the newest members!   We hope to see you, in person, in July of 2009!!

-Connie <3

Alright!  We are off to a great start.  Right now we need to begin collecting the funds that are necessary to hold the conference.  We need everybody's help!  Let's go!!! 

And, I am pleased to announce the participation of the Joshua Frase Foundation in helping us put on the conference!

This is all coming together so nicely : )

Connie