CT Support Group Minutes 12/07/17

Full Group Meeting

Bernie has found a place for respite care in Lentegeur. She is gathering more details and will let us know when she has the information.

Bernie been in contact with the JHB HASA community where there is a gentleman with HD in his family with a large piece of land. He has said he would like to build a care facility for people with HD on his property. Bernie is going to JHB and will give us feedback when she returns.

Bernie has been doing some adult nappy research and she has found the best quality and value for money to be at Nappy Warehouse. She will be contacting them to find out if we can get a charity discount if we buy in bulk.

There is a now a Gauteng social worker who will specifically focus on HD cases.

Michael Howards (HASA Director in JHB) has brother, Grant Howard, who will now be doing full-time fundraising in Gauteng.

There was a discussion around patients no longer being allowed to go to Groote Schuur for regular monitoring. Patients will now need to go to their local GP, clinic or hospital. There was a general feeling that GPs are not always familiar with HD, and it was suggested that we educate our GPs.

Judith is part of a craft group which she has found to be very fun and fulfilling, they are all ladies and do lots of amazing things such as knitting 57 scarves for the homeless. They have also making 700 Shwe Shwe Jo-Jo Puffs for the All Woman Project for the woman’s own exhibition for Woman’s Day on the 9th August.


**They need wool for further projects, so bring any you have to the next support group.

Everyone is welcome!

Venue: Joon Coffee Shop, Palmer Road, Muizenberg
Every Friday
Contact Judith for more information: 082 3333 649