Location
Online
A four week virtual course for parents of children under 18 affected by Huntington’s disease
About the course:
The course provides a safe, supportive environment to build understanding of Huntington’s disease, develop practical coping strategies, and connect with other parents facing similar challenges.
Who this course is for:
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Parents and carers of children under 18 impacted by Huntington’s disease
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Families seeking emotional, practical, and educational support
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Parents looking to better understand how Huntington’s disease affects family life
What you will gain:
By attending this course, parents will:
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Increase their understanding of Huntington’s disease and its impact on families
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Learn communication strategies for talking about Huntington’s disease with children
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Explore coping mechanisms around guilt, stress, and family wellbeing
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Connect with other parents through a facilitated peer support group
Participants will also have the opportunity to join a WhatsApp peer support group with parents in similar situations.
Course schedule and speakers:
Week one
Topic: Huntington’s Disease Association services and support
Date: Friday 10 April, 10:00am – 11:30am
Speaker: James O’Connor, Team Leader – Huntington’s Disease Youth Engagement Service (HDYES) and Specialist Youth Worker (North)
James O'Connor leads the Huntington's Disease Association's Youth Engagement Service, and has extensive experience supporting families affected by Huntington's disease.
Week two
Topic: Research update in Huntington’s disease
Date: Friday 17 April, 10:00am - 11:30am
Speaker: Elizabeth Broom
Elizabeth Broom works in Huntington's disease research and will provide parents with an accessible update.
Week three
Topic: Talking about Huntington’s disease as a family
Date: Friday 14 April, 10:00am - 11:30am
Speaker: Alison Metcalfe, CEO and founder of LOHA
Alison Metcalfe is a Therapist specialising in family communication, with a particular focus on Huntington’s disease.
Week four
Topic: Coping with guilt and family wellbeing
Date: Friday 01 May, 10:00am - 11:30am
Speaker: Dr Sarah Gunn, Clinical Psychologist
Sarah Gunn is a Clinical Psychologist and co-lead for the Leicestershire Huntington's disease Network. She has offered a huge amount of support to the community through programmes such as her Acceptance and Commitment Therapy courses.