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Save the Date: 2016 MDF Annual Conference

Mark your calendars for September 15-18, 2016, to join the MDF team, international researchers, scientists, clinicians, industry representatives, policy makers, and hundreds of DM community members at MDF’s annual conference. We will share the latest research and disease management strategies as we come together to support and inspire one another. This year’s program includes a strategic meeting of conference attendees with the FDA to help drive their perspective on DM therapy review – don’t miss this; we need your voice! Read more.




International Alliance Formed for
Care and a Cure

MDF has joined in a strategic alliance with the newly-formed Wyck Foundation, a UK-based nonprofit dedicated to funding DM research, drug development and patient advocacy. This partnership will support the global effort needed to accelerate our understanding of DM, promote drug discovery and improve care for DM patients. More information on the Wyck Foundation is available here.

MDF and Wyck Announce 2016 Research Fellows

MDF and Wyck’s first joint project is the evaluation and funding of six new post-doctoral research Fellows. Their projects range from evaluating the cognitive impacts of DM to making a mouse model for DM research. Read more about the work the 2016 Fellows will be pursuing here.

MDF Welcomes New Staff

The MDF team is growing! Paul Formaker has joined MDF as Program Director, bringing valuable experience to the team from his time as a Senior Clinical Research Coordinator at the University of California, San Francisco. Liz Haas has stepped in as MDF’s Director of Communications to help keep you up to date on MDF happenings and the state of Care and a Cure. 

MDF Offsite Sets the Stage for 2016

MDF’s board and staff team spent two days together in early January evaluating the impact of 2015 initiatives and setting priorities for the coming year. Read more about our plans for a break-through year in 2016 here.

February is Rare Disease Month

Rare Disease Day takes place February 29. The goal of this international day is to raise awareness about rare diseases among policy makers and the public. MDF will host a webinar in early February on what you can do to influence policy makers. We will share activities you can participate in throughout February, culminating in a Congressional Call In on Rare Disease Day. Stay tuned for more information about how you can participate. Read more about Rare Disease Day 2016 here.

Upcoming Support Group Meetings:

1/21 - January Caregiver Virtual Meeting
1/23 - Denver, CO
1/23 - Washington, DC
1/24 - Northern California
1/24 - Dallas, TX
2/06 - Northern California
2/20 - Atlanta, GA
2/20 - New Orleans, LA
2/21 - Orange County, CA
2/27 - February Caregivers Virtual Meeting 

Upcoming Events:

1/24 - Team NES @ the Miami Marathon
1/30 - Stanford Myotonic Dystrophy Meeting
We have a new homepage look for the new year. Our calendar can now be found in the events section.
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Phone: (415) 800-7777
Email: info@myotonic.org
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