In 1987, a small group of parents were regularly meeting at their clinic appointments in London. After feeling they wanted to meet other families in the same situation, they founded Duchenne Family Support Group (DFSG). Now, they are joining the global community and the World Duchenne Organization.
Duchenne Family Support
Phillippa Farrant, Development Officer at DFSG, explains their journey. “The aim of DFSG is to support families around the country. At the beginning this was through a newsletter, fundraising, and social events like our yearly BBQ/sailing day at Bewl Water. In later years we were including subsidised holidays so families could spend time with one another. A small number of parents nationwide became contact families. This means that others in their areas could get in touch for moral support and advice”.
Diagnostic journey with Duchenne
She continues: “Now, almost 30 years later, technology has improved greatly. The diagnostic journey with DMD is very different, and we now have nearly 600 families on our books spreading across the UK. We have a small committee of volunteers and one paid Development Officer. Our mission has always been “Families supporting families affected by Duchenne Muscular Dystrophy”.
Working with other charities
Because we have grown, our work is diversifying to include working with the other charities in the UK. Most of them have slightly different missions and are bigger than we are. We work closely as advisors for research, supporting charities recruiting for clinical trials. Moreover, we are working with clinicians and regulatory bodies, to support families and to improve the lives of those with Duchenne.
World Duchenne Organization
As a result of collaborations and technological developments, Phillippa discovered the World Duchenne Organization. “Collaboration is key to better understanding, support and awareness of rare diseases such as Duchenne Muscular Dystrophy. Joining the global community, we are bringing our years of expertise of working with families, from diagnosis to end of life. In conclusion, we look forward to working with other such groups across the world to help families, support clinical trials and research.”