We are sad to announce that Annette Beal (pictured with beloved husband, Mick), who has been a member of the CJD Support Network Executive Committee for seven years, has decided to step down from her role. To honour and celebrate Annette’s commitment and contribution to the work of the CJDSN, our coordinator Beth interviewed her about her experience of being involved…

Q: Hi Annette! Could you start by saying a little about yourself and how you became aware of the CJD Support Network?

A: I had never heard of the CJD Support Network until it was mentioned to me by Blaire, the nurse from Edinburgh. Following the death of my husband in 2017, I made my first ever contact with Gillian (former National Coordinator) and my journey started there.

Q: What would you say motivated you to join the committee?

A: After attending two of the annual Family Support Meetings and seeing the great work and support these events, and the continual support, give to families dealing with or affected by CJD I too wanted to be able to give something back for all of the support they had given me and my family when we needed it.

Q: How has the experience of being on the CJDSN committee been for you?

A: I have thoroughly enjoyed being on the committee both on a personal level as well as knowing I am helping others. This was something I would have never ever dreamed I would do and was so far out of my comfort zone – but I am so glad I took the plunge and joined. The appreciation I got for being part of the team was s worth it and the comfort I got from knowing I was able to help, particularly in the peer support meetings, was very humbling. This has helped me as much as it has helped others which was unexpected.

Q: You contributed so much during your time on the committee. As well as attending quarterly committee meetings and the family support meeting, you also played an active role in decisions about caring grants and something which I have personally found so valuable is having your input in the online peer support groups. Is there any aspect of the work that you found particularly rewarding?

A: The mutual understanding of what my family had been through watching a loved one suffer from CJD, and being able to do the same for other families I came into contact with was really rewarding.

Q: What are your hopes for the future of the CJDSN – where/how would you like to see it grow and develop?

A: The changes I have seen since joining the committee have shown the Network growing and getting recognition for the hard work that is put in. I hope this will continue and give families the help and support needed.

Q: Finally, is there anything you’d say to people who are thinking of volunteering for the CJD Support Network?

A: Just go ahead and do it – it’s something you will never regret!

The CJD Support Network Executive Committee, and National Coordinator Beth, would like to say a huge thank you to Annette for her fantastic contribution which we know that many family members will also be so grateful for.