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02/11/2016 - 12:25pm

Ionis Pharmaceuticals is currently seeking trial participants to evaluate an experimental DM1 drug, IONIS-DMPKrx, that may help modify the disease rather than just treat the symptoms.

01/28/2016 - 7:43am

Rare Disease Day on Feb 29th gives us an opportunity to shine a spotlight on DM. MDF has activities planned for the entire month of February. Find out how you can join us in speaking out about DM.

01/28/2016 - 7:35am

The use of anesthesia raises special risks to DM patients, which include heightened sensitivity to sedatives and analgesics. Serious complications are most common in the post-anesthesia period when risk of aspiration and other complications are increased. 

MDF has published two versions of its 2016 Anesthesia Guidelines:

  • Click here for a handy, one-page summary of the anesthesia guidelines to share with your clinician and anesthesiologist. 
  • Click here for the complete "Practical Suggestions for the Anesthetic Management of a Myotonic Dystrophy Patient".

New to DM? For here for more information.

 

01/14/2016 - 12:32pm

Word came from the FDA on January 14th that it would not approve the new drug application for "Kendrisa,"  Biomarin's antisense-oligo based drug for Duchenne muscular dystrophy.

01/14/2016 - 11:59am

End of year donations were more generous than ever this year, inspired in part by a $15,000 match contributed by the Boekelmann family, bringing us to over $1.1M in total 2015 contributions. A huge thank you to each and every one of you for being part of this special community and helping to sustain it. Happy New Year!

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