Family, Friends and Duchenne joins World Duchenne Organization

In 2019, Lindy Filis, mother of a child with Duchenne, began questioning why family life and friendships seemed so overwhelming. Knowing that hers was not the only family struggling, she founded Family, Friends and Duchenne (FFD) to share what she learned with the Duchenne community, their extended families and their friends. Now, Family, Friends and Duchenne joins World Duchenne Organization (WDO) as Full Members.

The goals of Family, Friends and Duchenne widened in 2022 to address common themes that individuals with Duchenne face – in particular, the obstacles to self-determination and social inclusion.

FFD provides information about the behavioral, social and cognitive effects of DMD on individuals with Duchenne, their families and their communities. They also provide opportunities for self-fulfillment for individuals with Duchenne, in addition to online community support for individuals, families, extended families and friends.

Family, Friends and Duchenne

“We achieve all this with our incredible team of world-wide volunteers” Lindy, President & Founder, explains. “Because of their generosity, FFD is able to provide life coaches for our community, livestreaming programs, support groups, and countless personal Duchenne stories. Specifically, we want to recognize DJ Kimble and Ryan Russell – two adults in their 40s with Duchenne – who have been instrumental in both the vision and the success of FFD.”

FFD strongly believes that together we are stronger, so it naturally made sense to apply to WDO when an FFD volunteer mentioned it.

“As a member of WDO, we intend to help drive global conversations about the cognitive, emotional and social components of DMD with our multilingual website. We also intend to expand support and advocacy opportunities for the social-emotional health of individuals with Duchenne, carriers, and the entire Duchenne family.

Thank You to WDO for all your hard work. We are honored to be welcomed as a member of your organization and for the opportunity to join the efforts in helping our global DMD community thrive.”

WDO likes to give FFD a warm welcome and expresses gratitude for the membership with the World Duchenne Organization. FFD’s commitment to raising awareness and supporting those affected by this rare disease is inspiring. We are looking forward to a longstanding collaboration and working together to improve the lives of people living with Duchenne and Becker muscular dystrophy.