The Christopher Project – Myotonic Dystrophy Survey

This is a comprehensive survey of the Myotonic Dystrophy Population. Its very interesting for me personally as my Sons name is Christopher and he was born in the Midwest. Recently the Report was mailed to interested parties and there is a link to the Full report at the very end of the report. I would recommend that you fill out the form and the receive the full report. There are some data summaries and survey samples in this post as well. Over 4,000 surveys were sent out to a randomized group of contacts on patient organization and others mailing list. Over 1000 were returned. Here is some summary information about the report.

The Christopher Project is a collaborative research project between national patient advocacy organizations, healthcare providers, and patients and families in the USA and Canada. It was designed to complement existing research by directly surveying patients and their family members/caregivers about their experience living with myotonic dystrophy.
To accomplish this, a large survey was distributed to patients in the summer of 2014 and a follow-up survey was distributed to family members/caregivers in early 2015. This Data Supplement is a summary of all of the responses to the questions asked on both surveys, presented as ‘frequency tables’ (i.e., how ‘frequently’ each answer appeared).
This Data Supplement is a companion to the main Christopher Project Report to the Myotonic Dystrophy Community, which can be found online at: www.christopherproject.org.

ChristopherProject-Patient-Survey-SAMPLE

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International Scientist meeting of Myotonic Dystrophy Researchers in San Francisco Sept 5-9 2017

The IDMC meeting will be in San Fransisco this year. Make plans to attend the scientific sessions  or the meeting of the Myotonic Dystrophy foundation

Please save September 5th – 9th, 2017 for the IDMC-11 conference being held in San Francisco, California. If you are interested in receiving updates about IDMC-11, please sign up online at www.idmc11.org.

IDMC 11

Welcome to the IDMC website, home of the International Myotonic Dystrophy Consortium (IDMC, or International Dystrophia Myotonica Consortia). This site is dedicated to the community of scientists, physicians and health care providers who have taken up the fight against Myotonic Dystrophy, a progressive neuromuscular disease that effects people and families around the world.

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Myotonic Dystrophy Researchers to Gather in San Francisco in Sept 2017

The International Myotonic Dystrophy Consortium  (IDMC-11) will meet in September 5th- 9th of 2017 in San Francisco California. This meeting features a strong scientific program of highly technical information with hundreds of scientists, physicians, and technical advisors. The meeting also features a patient program as well with some information transfer to the patients. Sign up below for more information:

http://www.idmc11.org

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New Book about a Family with Myotonic Dystrophy

There are not many books about myotonic dystrophy. There is a fictional series about a skater that has myotonic dystrophy. I wrote a short book about the hopes and aspirations of my son “The boy who was President”. Now comes a great biography about a family with Myotonic Dystrophy. A must read for all with the disease. Here’s a short introduction:

As a young girl, my constant goal was to help my brother, Dustin, walk. Dustin’s limits were hard to gauge because he constantly surpassed expectations. He was born with congenital myotonic dystrophy and expected to die, then to live three months, then three years. Instead, he gained strength and capabilities until age 13, when he had a simple cold and just did not wake up from his nap. His body became too much for the largest muscle in his body, his heart.

While Dustin was alive, I threw quarters in wells, prayed every night, and practiced with him every day after he had surgery and got corrective braces. I would stretch my brother’s legs, rotate his ankles, do resistance exercises and help him practice standing. At age 12, I thought willpower was so strong that, through perseverance and dedication, I could will my brother to walk.

Three years older than my brother, I grew up doing adult caretaking tasks. Through the years, I would change thousands of diapers, brush Dustin’s teeth, lift him into bed, administer nebulizer treatments, clean his feeding tube, watch him when both my parents had to work, bathe him, unload his wheelchair from the bus and play with him. Most things I did for my brother were helpful, but with my conceptions about willpower and Dustin walking, I pushed my brother past his comfort level more than once and caused more pain than progress. For me, a healthy sibling, willpower was a tool to push past obstacles. However, the same view I took of my young healthy body proved detrimental to my brother’s and caused him pain.

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MD Care Act Reauthorization 2013

MD CARE Act Reauthorization (2013) Your help is needed

Share this post  And Take Action. Write or call your senator and congressperson today

The passage of the original MD CARE Act in 2001 was a “game changer” for the myotonic muscular dystrophy community, and since that time, we have  “moved the needle” in clinical care and therapy development. The MD community worked hard to ensure that the MD CARE Act would become law, and all our efforts paid off. The Rochester Center for excellence was established and has provided great strides in myotonic dystrophy research. But this helps not only myotonic dystrophy.

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