Spring Update from MDF’s CEO

Published on Thu, 04/15/2021

Dear MDF Community,

I hope this note finds you and your families strong and healthy during the beginning of this beautiful spring. It has been a busy and exciting start to 2021 and we hope you have been able to take advantage of the all of the myotonic dystrophy experts and drug developers sharing their knowledge and time with us over the last several months. I want to take minute to share updates about a few of our other major initiatives for this year. 

Strategic Planning

Thank you to everyone who has participated in interviews, focus groups, and surveys during our strategic planning data collection and learning phase. MDF and Third Plateau, the strategy firm helping guide our strategic planning process, are now beginning to analyze feedback and data from over 800 members of the DM ecosystem! Over the next several months MDF’s Strategic Planning Steering Committee and Board of Directors will work together to interpret the results, identify community-driven priorities, and develop goals and objectives that will serve to guide MDF’s work toward Care and Cure over the next few years. We will continue to share our progress through the next phase of the project.

Annual Conference – September 10-11, 2021

We are excited about recent advances in COVID-19 vaccine distribution and availability over the last several months. We had hoped to be closer to reaching herd immunity by this summer but given the introduction of new virus variants, uncertainty about how effective the current vaccines may be against new variants, as well as the percentage of the population still unvaccinated, it is unclear when that might happen. As a result, in an effort to protect our most vulnerable community members, MDF has decided to hold our annual conference in a virtual format again this year. I know this is disappointing for many of us - including me, as I was looking forward to meeting you in person - but until our public health experts indicate it is safer to travel and gather in large groups, this is the safest option.

Please mark your calendars for Sept 10th and 11th, 2021 for our virtual conference. We are planning an exciting event full of educational opportunities, networking, and entertainment, and plan to open registration in the next month. The conference webpage will be updated as new information is available. We hope to "see you" in September and definitely plan to return to an in-person or hybrid conference structure in San Diego, California in September 2022 (tentatively the 9th and 10th)!

Annual Gala - October 22, 2021

Last year was our most successful gala ever, thanks to our very generous and dedicated community of supporters, and we hope 2021 will be even more successful! Aligned with our conference format decision, in a sustained effort to keep our community as safe as possible during the pandemic, our annual gala will also be held in a virtual format in October 2021. Our Gala committee has just begun to plan the special event, which serves to raise funds to advance MDF’s mission. As new details become available, we will post them to the gala webpage. Never fear however, if you are looking forward to attending an in-person gala, we have already confirmed Thursday, October 20, 2022 as our next in-person gala at New York City’s Sony Hall!

With respect and appreciation,

Tanya Stevenson, EdD, MPH
Chief Executive Officer