2013 CMD Family Conference – July 14 & 15
The 2013 Family Conference planning is well under way! Please visit the conference webpage to register if you will be attending!
Registry Upgrade Complete
Please help us as we expand our registry capabilities by visiting and updating your CMDIR profile.
Haven’t registered yet? We need you! Visit www.cmdir.org today and register to join us we move our community forward in research, advocacy, and clinical trials.
Early in 2004 we found out we were expecting our fourth child. We already had 2 girls, and a little boy who had been born with lower limb deficiencies. We had a good genetic counsellor, who explained to us that we had a very small chance that our new baby would have the same disability, but just to be sure, offered us an in-depth ultrasound if we waited until 16 weeks gestation. We happily accepted, and during the exam were relieved to count ten fingers and ten toes – so relieved, in fact, that we couldn’t believe when the technician explained that she would have to get the doctor on duty since there seemed to be something wrong with our baby’s feet. Continue reading Emma’s Story
CMD Perspectives: A Journal
Jun 14, 2012: Management of a Ventilator Dependent Child – A Caregiver’s Perspective
By Ann Schrooten
PART II – The Personal Perspective
The Role and Challenges of the Caregiver
Caring for a child who is ventilator dependent requires 24/7 vigilance and involves a level of skill and knowledge that exceeds the typical parent’s experience. More…
Cure CMD Day on the Hill is July 16 in Washington D.C.
We are very excited to announce the third annual Cure CMD Advocacy Day on the Hill on Tuesday, July 16, 2013 in Washington, D.C.! This is an important time of advocacy for Cure CMD. Our families will be meeting with members of Congress to advocate for essential initiatives, including re-authorization of the MD Care Act. Congressional visits also help us build key relationships with these important decision makers.
If you already know you will be participating in our 2013 Day on the Hill, please feel free to contact your two Senators and House Representative now to make arrangements to meet with them on July 16 in Washington D.C.
We can all make a difference! Please make plans to attend and email Jackie Nelson of your interest at Jackie.email@example.com
Click here for more information on how to schedule legislative visits.
Never give up – Boy with muscular dystrophy earns black belt
Olivia Beanie & Bowtie Available for Purchase
An awesome friend of the Bloomfield family (daughter Olivia 12 months was diagnosed with MDC1A) makes amazing handmade caps and accessories for babies and children. $10 from every order will be donated to Cure CMD! Help raise money for research for this disease affecting many children and adults around the world. Get your Olivia Beanie Here! Check out the Olivia Bowtie Here!
Muscle Club Apparel T-Shirts benefit Cure CMD!
Jeff Smith, parent and supporter of Cure CMD has launched a new line of t-shirts with 100% of the proceeds going to benefit Cure CMD! His company, Muscle Club Apparel, is a an online retailer of sports inspired t-shirts and product. Please help to spread the word in support of these awesome products to supporters of Cure CMD and your own personal networks! Thank you for the support, Jeff!
Current Trials and Studies
Apr 15, 2010: For up to date information on CMD and LGMD clinical studies and trials
Cure CMD Research News
Mar 6, 2013: Using exon skipping technology in a model system of Ullrich congenital muscular dystrophy
From Muscular Dystrophy Campaign
A group of scientists from Italy has used exon skipping technology to restore the production of a protein called collagen VI in a model system of Ullrich congenital muscular dystrophy. The researchers used cells grown in the laboratory to demonstrate proof of principle that exon skipping might have the potential to be developed as a treatment for some people with this condition.
Click here to read article…