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In April 2016, 6 months after my son was diagnosed with Duchenne muscular dystrophy, I joined the Action Duchenne team. I felt I had to do something to help the scores of families navigating this journey which I had found myself on.
4 years later, I am a part of an incredible small, yet powerful team who support, educate and work on behalf of the UK-wide Duchenne community.
As a lover of people, keen to bring out the best in others, through communicating, supporting and nurturing, the most personally enriching part of my role is supporting families. I feel privileged to take families through from day one of their diagnosis with this rare, severe muscle wasting condition. From the first phone call, these families know they are not alone. Immediately, I make it my mission to ensure they feel more positive about the future, that they have enough information to help them right now, that they no longer feel hopeless, isolated, devastated.
We have the benefit of decades of first-hand knowledge, information and advocacy experience in our wonderful Patient Advocacy Officer, Angela. If a family is dealing with relocation, or adaptations, EHCP or how to get the right equipment, Angela always takes the reins and helps guide the family through the process. Her knowledge has helped hundreds of Duchenne families over the years and I am proud to get her involved with families that I am supporting.
As a Duchenne parent myself, I never profess to being great at the science behind Duchenne, I’ve had to learn it along the way, as most Duchenne parents do. However there is so much more for me to learn. There often comes a time when I’m supporting a Duchenne family when their questions about Duchenne science, research and clinical trials goes beyond my expertise. It is at that point that I am so pleased to get Neil, Head of Research, involved in helping the family. With years of science communication under his belt, Neil is amazing at explaining complicated technical details to families, allowing them to completely understand their young person’s condition and to feel empowered.
Having experienced issues around mental health, siblings, housing and navigating the Duchenne journey myself, I often discuss these topics while supporting families. Although there is no right or wrong answer, often it is just so incredibly helpful for parents to discuss the problems they are experiencing with someone who completely gets it.
We are here for everyone, we truly are, from day one of diagnosis through to adulthood. I am proud to be part of the team who are focussed on supporting families, along with funding research for all, running education programmes and striving for a more inclusive society. If you feel ready to have a chat with one of us, or have a question (no matter how big or small) we would love to support you. Please do get in touch with us on the phone, via Facebook, Twitter, or drop an email, whichever you are most comfortable with.
