In December 2019, the Neuroscience and Mental Health Research Institute hosted our first Timothy Syndrome family day. The event was also the official launch of Timothy Syndrome Alliance UK.
The day was a huge success. It featured talks from international researchers and clinicians working with Timothy Syndrome and CACNA1C variants, including Katherine Timothy herself.
It offered families from across the world an opportunity to come together and share their experiences. Eight Timothy Syndrome families from England, Scotland, Wales and Dubai met for the first time ever. We experienced tears, joy, friendship, learning and hope.
We plan to hold our next family day in 2021.
Feedback
After our first family day event, families and speakers shared their thoughts.
What an amazing day! The best part for me was meeting all the families and hearing their stories. We all connected and shared how TS had affected our families.
Hearing from Katherine Timothy was amazing. Finding out about the history of TS was the best bit.
We’d love to go again! The family day is a fantastic opportunity to connect with people who know what we’re going through, and to help to move TS research forward.
It was lovely to hear an update on what’s known about TS, the multisystem nature of the syndrome, and to meet other patients and families coping with the condition.
I would definitely go again. It would give us more chances to talk, be around each other and learn more from our children. The event gave me so much knowledge.
Having a chance to speak to other parents who have been where we are now was a huge help for us in terms of knowledge and mental support.
The event had a big impact by helping us understand Timothy Syndrome better – not only the condition itself, but also that it may affect others in the family.
How could you improve the event? Give us more time together!
Help us provide more support to our community
Your donations will help us stage more events, bringing families together in a supportive environment.
Your contribution will help:
- raise awareness to drive research and clinical development
- enhance scientific understanding
- reduce the isolation faced by families
With your help, treatment and a cure for future generations is closer to being found.
See other ways that you can support us.