Our Patient Advocate and Registry Curator, Angela Stringer attended a meeting this week in a Norfolk primary school to support a Duchenne family.
EHCP meeting
The family approached Action Duchenne to help them navigate the Education Health and Care Plan (EHCP) process for their son who lives with Duchenne muscular dystrophy. Angela was delighted to attend the meeting with the parent, along with the Physiotherapist, Neuromuscular Care Advisor, school SENCo and class teacher.
The meeting covered important aspects of school life, such as the child’s safety accessing different parts of the school, attainment, helping the child to achieve his full potential, using technology such as a computer.
Supporting Duchenne families
Angela was able to support the parent in the meeting, to confirm her concerns and reiterate her views about her son and his needs. It was a detailed meeting, where Angela’s attendance has greatly appreciated.
Following the meeting, Angela will be submitting a letter of support of the EHCP recommendations to the school.
Our vital advocacy work
On a daily basis, the Action Duchenne team support families at all stages in their Duchenne muscular dystrophy journey. We speak with families to help them navigate everything from EHCPs to transitioning to adult services, from starting school to housing adaptations.
This vital and often life-changing support is only possible through your donations. Thank you to all our supporters who enable us to continue to support and Duchenne families and advocate to the wider community.
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