Glass Half Full

Published on Thu, 03/10/2016

MDF Outreach Director Transitions to Exciting New Role

Former MDF Outreach Director and Support Group Trainer Leslie Krongold has been a leader in the DM community in developing support systems for individuals and families living with myotonic dystrophy. Leslie led a two-year effort to launch and build MDF's international network of support groups, and has identified, trained and supported the support group facilitators who lead these groups. Leslie announced in early 2016 that she was stepping away from her MDF role to launch a compelling new venture also focused on creating support for people living with chronic illnesses like DM. All of us at MDF hate to see Leslie leave her Outreach Director position, but we share her enthusiasm for her new career focus, a podcast program called: Glass Half Full. Glass Half Full should be on your list of DM support resources; learn more about it via Leslie's new website: http://glasshalffull.online/.

MDF Support Group Network Support and Expansion Continues

MDF is deeply committed to the support network Leslie has built. Working with our excellent team of support group facilitators, MDF is positioned to expand its reach and make an even greater impact in the coming year. Our Program Director, Paul Formaker, is leading the effort to develop new support groups and programs based on an in-depth assessment of the current Care landscape for DM MDF undertook in late 2015. Our goal in the Care landscape assessment project was to ensure that MDF understands needs and opportunities with regard to current access to DM care, so that we are as strategic as possible in our program development efforts. We will announce new programs as we roll them out over the coming year.

Here are some highlights of program work already underway:

  • Phone buddies: MDF is connecting community members around the nation with 1-to-1 support. This critical service is geared towards the newly diagnosed, but we encourage anyone who needs support to reach out. We are currently wrapping up a pilot program and will launch Phone Buddies more widely this spring.
  • Medical School Roadshow: This program brings DM education to top medical schools around the country to improve diagnosis and care.
  • Care Considerations: MDF is driving development of consensus based Care Guidelines with experts in the field. Upon completion, they will be disseminated to doctors around the world.
  • 2016 MDF Annual Conference: Based on attendee feedback and direct community involvement, we plan and host the largest DM conference for affected families and researchers each year. Join us this year in Washington, DC, September 15-17.