Family, Friends and Duchenne Introduction

Family, Friends and Duchenne Introduction

Thank you so much for the opportunity to be here.

My name is Lindy Filis. My husband and I have a 12 year old son with Duchenne, a 4 year old daughter and we live in the United States. I am also the founder of a non-profit called Family, Friends and Duchenne.

Several years ago, I really started to struggle with the relationships in my life – with my kids, husband, even extended family members. I decided that there must be common patterns in Duchenne families that complicate life beyond just the physical progression.

So, I created Family Friends and Duchenne to better understand these patterns and to share them with our community. We focus on managing challenging Duchenne behaviors, improving family dynamics, eliminating social isolation, supporting the individual’s personal development, especially in achieving success in their life’s goals and romantic relationships. Of course, all the while navigating various levels of change, loss and grief.

We encourage tough conversations that are integral to improving & supporting quality of life with DMD. We also facilitate social change through education, support and inclusion. We help everyone affected by DMD: the individual, siblings, parents, grandparents, extended family, friends, and peers all over the world.

1. Education
We have a multilingual website, weekly livestreams with DMD professionals, weekly livestreams with community members, podcast of livestreams, YouTube channel for the recordings of livestreams, twice daily social media posts, and we also provide graphics for sharing on social media.

2. Support
In addition to our multilingual website, we also offer multiple weekly zoom support groups, multiple Facebook groups, MHM livestream, recording and podcast, DMD life coaches worldwide and volunteer opportunities.

3. Inclusion
As for encouraging inclusion, we plan to have an egames sports team, we have plenty of volunteer opportunities, we collaborate with multiple other-non profits, and we have social media graphics to use for your own advocacy.

We know there is so much more to do for our community. We are very eager to collaborate with other organizations and we also welcome ideas, comments and concerns from our community.

We are here for you.