Community Call: Events and Advocacy

Join MDF for a Community Call!

Wednesday, January 29, 2020
4:00 PM PST
7:00 PM EST

Register Online!

Phone Number: (562)247-8422
Access Code: 670-291-658#

Learn how you can make a difference! Join MDF for a Community Call on January 29 to discuss upcoming events, tips and tricks for planning your own event, an advocacy update on the current legislative landscape and how international events like Rare Disease Day are making a huge impact.

Learn About Upcoming DM Events

During the call, we will review two events that MDF is hoping to have national participation in – Rare Disease Day and DM Family Days at Cedar Fair Amusement Parks. Both events are open to the entire DM family. The audiences for this training are Patient and/or Caregiver Leaders in the DM Community. This training will guide leaders, provide a template of materials to organize these events and options for levels of participation (online, in-person, etc).

Advocate for Myotonic Dystrophy

Do you wish there were more federal funds available to support myotonic dystrophy research? That all families had access to a myotonic dystrophy newborn screening? Want to learn more about how to become involved in DM Advocacy!

This year, MDF is launching a major initiative to communicate to our elected leaders that we must continue to increase funding for myotonic dystrophy research to help us find treatments and a cure. We are also advocating for the passage of the Newborn Screening program, which will serve as a platform for DM screening to help families avoid the diagnostic odyssey and get the help they need right away. We will review all things you will need to be a powerful and effective MDF advocate!

Questions?

Have questions? Please feel free to reach out to MDF's Program Director, Michael Knaapen, at michael.knaapen@myotonic.org or by phone at 415-800-7777.

We hope to see you soon!

Date(s): 
Wednesday, January 29, 2020

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