2020-21 FD/MAS Alliance Impact Report: Ever Onward

Adversity can lead to growth. We can become stronger, grow closer with friends and loved ones, and gain confidence in ourselves. When we dig deep and find determination, a challenge can lead to growth; a time of isolation can push us to reach out and find connection. That is the lesson of this past year.

As a member of the FD/MAS community, I have always known what medical uncertainty feels like. As people living with a rare, chronic, and often debilitating disease, it is our daily lived experience. When I was diagnosed with COVID-19, I had to, once again, dig deep and find the resolve within myself to persevere, and I’ve seen that same focus and fortitude in the FD/MAS Alliance over these difficult months.

As an organization, we’ve taken this time for introspection: to reevaluate our strategic plan, change our name to FD/MAS Alliance and launch a new website. The FD/MAS Alliance is more inclusive and more focused on the necessary work of improving the lives of those living with this disease. This Impact Report is part of our metamorphosis – a report of our achievements thanks to you and gratitude for your support during the last 18 months.

This world has changed because of COVID-19 – for better or worse. Science is moving faster than ever before, which is a hopeful change for the FD/MAS community. At the FD/MAS Alliance, we are ready to make sure the advances happening in medicine translate to improvements for us.

My heart aches for those who died or lost loved ones during this challenging time. For them and those who are still with us and living with this debilitating disease, we look to the future with hope and determination.


With warmth and gratitude,

Lauren Jae Ruotolo, President FD/MAS Alliance