Great benefits from attending a Family Support Meeting

by Sandra & Mike Walshe

In August 2007 my sister in law Kay died of Sporadic CJD, leaving us all devastated and unable to make any sense out of what had happened to her over the last five months.

Three Months later my husband and I attended the family support meeting, not something Mike would have even contemplated under normal circumstances.  Initially his thoughts were;  "Why would I want to sit down in a meeting all day with people I don’t know, what will I be expected to do, do I really want to talk to strangers about loosing my Sister while I’m still feeling traumatized & upset".

But these were not normal circumstances, no one he spoke to knew anything about CJD, the Doctors treating Kay had not met anyone with this disease before, it felt like a closed shop when it came to finding out any information other than through the CJD support network helpline which really did feel like a lifeline at the time.

On reflection now he thinks it was the best thing he ever did to start the healing process of coming to terms with his loss. 

He felt that for months nobody he spoke to knew anything about  CJD and then he found himself sitting in a room full of people who all knew something about the disease.  It felt almost serene.

Everyone who attends the meeting is affected by CJD in some way or other, families with someone newly diagnosed, people who are living with the disease or the threat of it and sadly those who have lost someone either recently or some time ago.  Everyone has a common bond and without exception benefits from the mutual support of one another. 

People generally arrive feeling a little anxious and uncertain as to what they are letting themselves in for, but always leave with a smile, better informed and reassured that they are not alone.

Experts in the field of CJD give talks about things of interest, they are on hand to ask questions either in a group or discreetly over coffee or lunch,  Some people just want to listen and take it all in.  There is never a better opportunity to raise the un-answered questions and talk to people in the same position, in a warm, friendly environment.   

We are looking forward to the extension of the family support meeting over two days this year; it will be good to have more time to spend with families who we have got to know over the years.    

On a lighter note for those coming who wish to take in some sightseeing, I feel duty bound as a Brummie to tell you a little of what Birmingham has to offer:

 You’re never short of retail therapy in The Bullring, Grand Central and The Mailbox, or you could enjoy a wander round Brindley Place’s stylish canal side bars and restaurants.   Birmingham is the home of the world famous Symphony Hall & the iconic, historic Town Hall, or you could take in a show in Theatreland, or visit Chinatown.  The Shakespeare Memorial Room and Secret Garden for views over the city are situated in the Library of Birmingham, or maybe you could catch a tram to the Jewellery Quarter.  These are all on the doorstep of the Burlington hotel, where the Family Support Meeting is held. This was formally known as The Midland Hotel that is referenced in the popular TV drama, Peaky Blinders. 

Do consider coming to the Family Support Meeting, I'm sure you will not be disappointerd.

Sandra and Mike


To be kept up to date on our Family Support Meetings, sign up to our mailing list by completing the form at: