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Ionis Pharmaceuticals Currently Recruiting for Clinical Trial


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. Click here to learn more.

MDF Commissioned Studies Give Insight Into DM & Pregnancy, Childhood DM Care

The results of two new MDF-funded studies offer findings to help guide future care of pregnant women with DM and children with congenital myotonic dystrophy.  

Every Body Counts Campaign – Win an Autographed Lab Coat

 
MDF wants to give you a monogrammed lab coat, autographed by leading DM researchers, when you participate in DM research. Find information on studies that need your help here and enter to win your autographed lab coat from MDF here. In DM research, Every Body Counts!

I Loved Being a Research Participant!


Susannah Savitsky, a 46-year-old Florida attorney, says being part of a DM study has "had a huge positive influence" on her life and provided her with an all-expenses-paid "little vacation." Read more about her experience here.

Ottawa Advocate in the News!

 
Teresa Buffone had never heard of myotonic dystrophy when her 32-year-old nephew died suddenly from it. This tragedy led her to become a significant advocate for myotonic dystrophy patients and care in Canada, and earned her MDF’s 2015 Outstanding Advocate award last September. Read Teresa’s inspiring story in the Ottawa Citizen

Families Raise Support for DM


The Esparis-Kugler and Bormann families, who have been amazing grassroots fundraisers for MDF over the past few years, hosted incredibly fun and successful fundraisers for DM earlier this year. Check out the Team Nes Miami Marathon pictures, and learn more about the Bormann’s Poker and Paint PartyContact us if you would like support for your DM event.
Upcoming Support Group Meetings:
2/27 - Verona, WI
2/27 - February Caregivers Virtual Meeting
3/05 - Ottawa, Canada
3/05 - Washington, DC
3/05 - Indianapolis, IN
3/05 - Greensboro, NC
3/12 - Northern California
3/13 - Williamsburg, VA
3/16 - Portland, OR

Upcoming Events:
2/25 - Webinar: Speak Out to Congress!
2/29 - Rare Disease Day Congressional Call-In
Speak out to Congress!
TODAY we are hosting a Webinar in which we will roll out our 2016 advocacy strategy and prepare to take action with a congressional call-in on Rare Disease Day, February 29, 2016. Sign up for the webinar, 10 AM (PT) / 1 PM (ET), find the numbers for your representatives, and download your script here!
Join the Community! Follow us: 

Toll free (US only): (888) 968-6642 
Phone: (415) 800-7777
Email: info@myotonic.org
www.myotonic.org 

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