Family Fun Day 2017 - Morgan Motor Factory
On 12th April 2017 the Marfan Trust held its annual family fun day at the famous Morgan Motor Factory in Worcestershire. The day kicked off with a welcome from Morgan CEO Steve Morris and Dr Michael Carr, chairman of the Marfan Trust. Highlights of the day included:
- A presentation on the advances in care and research regarding Marfan syndrome patients from Dr Anne Child. The presentation focused on teenage problems and progress with the AIMS Trial.
- A workshop entitled "Managing Marfan" from Katherine Ferguson and Karen Sheehan. Katherine is the only member of her family with the condition and felt very isolated in understanding how to cope with the physical symptoms. She recently set up a support group where she lives in Bristol for patients to share experiences. Karen Sheehan is a Cardiac Research Sister at University Hospital Bristol. The workshop grouped attendees by their home region so people could start to form relevant local support groups with whom they could continue to contact outside of the event. Common themes that came out of the workshop revolved around the lack of a "one stop shop" holistic care for Marfan patients and their families, the lack of psychological care, the scary concept of heart surgery, stress experienced by other family members, many of whom develop psychological symptoms as a result of having family members suffer the disease, the lack of availability of sufficient good quality, concise literature for GPs, dentists, gym staff, teachers, employers etc. and the importance of the Marfan community themselves, sharing experiences and information and providing support.
- A range of Morgan Factory Tours, face painting and a variety of children’s activities.
Overall 80 people attended the fun day. It was a lovely day and it was a great opportunity for the team, patients, their friends and families to meet one another, make friends and form a support network. We’re looking forward to the next one!
If anyone has any suggestions or ideas for the next family fun day or other event, we’d love to hear from you. Please contact firstname.lastname@example.org or on +44 (0)20 8725 1189.