• Planning for the 2015 CMD Family Conference is under way!

    The 2015 CMD Family Conference will be held on June 26 – 28, 2015 Mission Palms Hotel in Tempe, Arizona. Click here for more information, and to take a survey indicating your interest to attend.

  • Connect – Register – Consent

    Get Counted

    Click here to view the Get Counted Videos

  • Help Support Cure CMD’s Holiday Match!

    Please help to support our mission to bring treatments, and one day a cure forward by sharing our status, considering a donation, and fundraising on our behalf. Every dollar will go to research. Be sure to reach out to friends and family! Click here for more information.

  • Earn Donations for Cure CMD Through Survey Monkey

    Cure CMD is partnering with SurveyMonkey Contribute! Take opinion surveys on SurveyMonkey Contribute, and they will donate $0.50 for every survey you answer. Click here to sign up:
    https://contribute.surveymonkey.com/charity/cure-cmd 

  • Amazon Purchases Can Benefit Cure CMD!

    Shop while benefiting Cure CMD at no extra cost to you! Amazon’s new program, Amazon Smile, will contribute 0.5% of the proceeds of every purchase to Cure CMD! You just need to select Cure CMD as the charity of choice. Let the holiday shopping begin: smile.amazon.com Once you’ve signed up, be sure to use smile.amazon.com to shop at Amazon from now on to make sure your purchases count toward the charitable giving.

   

Selena’s story

selena1Selena Louise was born on September 19, 2006. Everything seemed fine and she scored well on the APGAR test. Within a couple of weeks we noticed she was not turning her head to the right. We went to see her pediatrician who referred us to an orthopedic doctor. The orthopedic doctor diagnosed Selena with torticollis and we began therapy to relieve the tightness in her neck muscles. Continue reading Selena’s story


CMD Perspectives: A Journal

Jun 9, 2014: Our journey with Walker Warburg Syndrome: Life, Death and Our Mission to Help Find a Cure

By Brendan Sullivan

As a military veteran who has traveled the world, I experienced more in a 6 year period than many people will ever get to experience.   I’ve been to countries that the majority of people will never be able to travel to.  But I’ve also experienced, twice, something which no one ever wants to experience:  I’ve buried two children in the past 5 years due to a rare form of Congenital Muscular Dystrophy known as Walker Warburg Syndrome (WWS). More…

Read All CMD Perspectives Articles


News and Events

Planning for the 2015 CMD Family Conference is under way!

The 2015 CMD Family Conference will be held on June 26 – 28, 2015 Mission Palms Hotel in Tempe, Arizona. Click here for more information, and to take a survey indicating your interest to attend.

Connect – Register – Consent

Get Counted

Click here to view the Get Counted Videos

Help Support Cure CMD’s Holiday Match!

Please help to support our mission to bring treatments, and one day a cure forward by sharing our status, considering a donation, and fundraising on our behalf. Every dollar will go to research. Be sure to reach out to friends and family! Click here for more information.

LMNA (L-CMD) Fundraing Campaign to Support Ongoing Research

Cure CMD has supported research for a number of projects – to date funding over $1.5M in research grants. Currently, Cure CMD is funding two of the world’s leading scientists in LMNA research: Drs. Gisele Bonne and Antoine Muchir.

The Dague Family has established a fundraising campaign to help ensure this valuable research continues to be funded. Please click here to visit and support their Crowdrise fundraiser.

For more information on LMNA (L-CMD), please visit the following links:

http://curecmd.org/types-of-cmd
http://curecmd.org/types-of-cmd/cmd-description#lamin-ac

News & Events Archive


Current Trials and Studies

Jul 23, 2014: Two New CMDIR Driven CMD Studies

We would like to announce 2 new CMD studies led by the CMDIR (Congenital Muscle Disease International Registry):

  • LMNA History Study will define how weight, ability to walk, breathing and heart function changes over time in infants, children and teens with LMNA-CMD.  This study will use existing CMDIR data, clinic records and hospital reports.  Analyzing data will help provide a better understanding of how LMNA affects a group of infants, children and teens. To participate in the study requires registration in the CMDIR (www.cmdir.org), completion of the CMDIR Intake Survey and Medical Release and genetic confirmation of LMNA-CMD . For more information on the study, contact, Linda Tarbox, CMDIR Volunteer Research Associate atlinda.tarbox@cmdir.org
  • CMD Sleep Study will analyze sleep study reports in children and adults with congenital muscle disease. The goal of this study is to determine the frequency of abnormal sleep study reports and the relationship between sleep study results, forced vital capacity, ambulatory status and need for current ventilatory support. This study will use existing CMDIR data, clinic records and hospital reports.  For more information on this study, contact Rachel Alvarez, CMDIR Associate Director at rachel.alvarez@cmdir.org
We would also like to provide you with updates on 2 ongoing CMD studies led by the CMDIR:
  • MTM Event Study has enrolled 31 participants. 12 participants have completed monthly telephone interviews for one year to assess the rate of change in several parameters including breathing, medications, medical care and hospital admissions.  To participate in the study requires registration in the CMDIR and genetic and/or muscle biopsy confirmation of myotubular myopathy. For more information on this study, contact Sabine de Chastonay, CMDIR Volunteer Research Associate at sabine.dechastonay@cmdir.org
  • CMD Breathe Study will analyze current respiratory issues and care provided to registrants in the CMDIR, including a separate survey of US and Canadian pediatric pulmonologists. This study has closed to participation and the CMDIR would like to thank all families that participated in this study. Data analysis is ongoing- and results will be summarized and provided to the community.
The CMDIR or Congenital Muscle Disease International Registry is an international registry focused on congenital myopathy, congenital muscular dystrophy and congenital myasthenic syndrome. The CMDIR was established to support clinical trials and provide data to evaluate current care and inform best practices.  For more questions on the CMDIR, please contact Rachel Alvarez, CMDIR Associate Director.

Nov 15, 2013: Collagen VI Hyperinsufflation Study

This research study includes children ages 5 to 20 years old with Collagen Type 6 Congenital Muscular Dystrophy. The goal of this study is to measure the effect of breathing exercise to stretch the chest in slowing the loss of breathing function. The breathing stretches are done with a machine called Cough Assist®. Click here for more information.

Trials and Studies Archive


Cure CMD Research News

May 6, 2014: Standard Operating Protocols to Evaluate CMD Mouse Models

Cure CMD has been working with the scientific community to develop standard operating protocols to evaluate CMD mouse models.  This work has been co-funded by the AFM and led by Dr. Raffaella Willmann. Developing a standard way to evaluate mouse models, assists Cure CMD in evaluating the size of the effect of any intervention and allowing data comparisons between labs.

www.curecmd.org/scientists/sop

Research News Archive


Medical Headlines from Other Websites

Dec 17, 2014: Hard-to-reach cancers targeted with ‘Trojan horse’ proteins

Scientists at Brunel University London have found a way of targeting hard-to-reach cancers and degenerative diseases using nanoparticles, but without causing the damaging side effects the treatment...

Dec 10, 2014: Genetic origin of Lou Gehrig’s disease more widespread than previously thought

Genetics may play a larger role in causing Lou Gehrig's disease than previously believed, potentially accounting for more than one-third of all cases, according to one of the most comprehensive...

Medical Headlines Archive


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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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