Hello, MTMCNMFamily!

Here are a few things you won't want to miss!

Replay: Community Conversations: Dynacure

On June 29th 2020, MTM-CNM Family Connection and Where There's a Will There's a Cure co-hosted a live Zoom presentation for the MTM-CNM family community. The guest speaker was Chris Freitag, Chief Medical Officer of Dynacure, who provided an update on the company's "UNITE-CNM" clinical trial. We were pleased to have over 40 community members tune in live for the presentation and question-and-answer session that followed. Watch the replay of the video here: http://www.mtm-cnm.org/blog/community-conversations-dynacure

Reminder: Register now for Monday's update with longtime MTM researcher and physician, Dr. Jim Dowling!


If you are interested in hearing from Dr.Jim Dowling on the current status of his research on repurposing Soltamox (Taxomifen oral solution) for MTM and clinical trial plans for the US and Canada, make sure to click the button below and register for Monday’s Zoom conference call co-hosted by MTM-CNM Family Connection and Where There's A Will There's A Cure.

If you have any questions, you will have an opportunity to submit them during the registration process. Please make sure to register no later than noon EDT the day of the presentation.

The call will be held this Monday July 13 at 8:30 pm ET/7:30 pm CT/5:30 pm PT.

Members of the MTM & CNM Patient and Family community are invited to register by clicking the button below.

We look forward to seeing you there!!!


National Burden of Rare Disease Survey

Individuals and families living with MTM & CNM: Please take this “THE NATIONAL BURDEN OF RARE DISEASE SURVEY” by Sunday, July 19th! EveryLife Foundation for Rare Diseases is collecting essential data across all rare diseases that will help demonstrate the public health crisis of rare disease, inform policy proposals, and work to improve the lives of those living with rare diseases and our families. Please help make sure our MTM & CNM voices and experiences are included! To complete the survey, click here.

(*The use of the word “burden” is an historical and economic-based term used widely within the healthcare industry. While MTM-CNM Family Connection believes it is time to culturally shift the use of this word in these discussions and advocacy, we fully support this effort to collect this essential data, on the COST of rare disease, in order to drive improvements for rare diseases. We never want our members living with a rare disease to interpret that their lives or care involved to live, is a “burden”. We will continue to advocate for the use of alternative language to re-frame these discussions. Let’s focus the conversation and resolve to improve the “inequities, injustices, biases, and barriers” that lead to increased costs for those living with rare diseases, rather than the “burdens” rare diseases bring. This data collected by the EveryLife Foundation will help the Rare Disease community to do that. Please spend a few moments to complete now!)

Stay Connected!

Be sure to follow our public MTM-CNM Family Connection Facebook page and to join our MTM-CNM Family Conference Facebook discussion group to keep updated so you don’t miss out on important resources and other events like this!

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