Report Out: Community Call January 2020

Written by Northern California Support Group Facilitator, Leslie Krongold, EdD.

To kick off 2020, Myotonic held a webinar on January 29 for all DM Community & Caregiver Leaders. Over 70 community members registered for the presentation by Leah Hellerstein, Leslie Krongold, and Kevin Brennan. For those unable to attend the webinar, you can download the slides here: Kevin's Advocacy Update>>> and Leslie's DM Family Day at the Park>>>

Advocacy Update

The main objective for the webinar was to ignite enthusiasm for two events Myotonic hopes to capture national participation. The annual Rare Disease Day takes place on February 28th. Kevin Brennan, an advocacy consultant for Myotonic, presented an overview of Legislative Advocacy 101. Participation from community members for this year’s Rare Disease Day can be achieved at many different access points. For example:

  1. Meeting with your local federal legislative representative;
  2. Participation in a local event with other members of rare disease patient advocacy organizations;
  3. Gathering together as a local community to write letters, make phone calls, and use social media.
  4. Email your senator to keep DM funded in 2020!

In Northern California, Myotonic is joining with NORD (National Organization for Rare Disorders) and CalRare to hold a public event at the Chabot Space & Science Center in Oakland, California. Last year members from the Northern California Myotonic Support Group met at Senator Dianne Feinstein’s office in San Francisco to discuss the Orphan Drug Act.

Family Day at Cedar Fair Amusment Parks

The second event Myotonic is hoping to get nationwide participation with is the DM Family Day at the Park. In April 2019, Leslie Krongold arranged the first DM Family Day at California’s Great America amusement park. This year the event has expanded to include other amusement parks operated by Cedar Fair throughout the United States and Canada.

Currently eleven community members have stepped up to organize a DM Family Day at their local park to be held either this spring or summer:

  1. Buena Park, CA with Loraine Dressler
  2. Northern CA with Leslie Krongold
  3. Shakopee, MN with Liz Naylor
  4. Kansas City, MO with John & Susan Cooley
  5. Charlotte, NC with Mindy Kim
  6. Kings Mills, OH with Suzette Ison & Ted Salwin
  7. Sandusky, OH with Suzanne Perkins & Carolyn Valek
  8. Doswell, VA with Venessa Hudson

If you are interested in participating, please contact Leslie at elkrong@yahoo.com. You can find a Cedar Fair park near you on their official website.

Questions?

Myotonic will help all volunteers promote these events to their local DM communities. For more information about holding a Rare Disease Day event in your community, contact Myotonic's Program Director, Leah Hellerstein, LCSW, MPH at leah.hellerstein@myotonic.org or by phone at 415-872-7924.

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