NEWSLETTER

HFACT Dinner in April

On the 27^th of April, Ann Roberts, the recently appointed President of the Haemophilia Foundation Australia, and Sharon Caris, the Executive Director of the HFA, were in Canberra on HFA business.

That night we had dinner at the River Kwai restaurant in Weston. As well giving members the opportunity to meet with Ann and Sharon, it doubled as an opportunity for Liz Gregg and Clare Reeves to get to know members.

The evening was a very pleasant and convivial one, well attended by about nineteen people including our two interstate visitors.  The party required two large tables, taking up most of the restaurant, a welcome but unusual thing for HFACT.

Happy Diners at the River Kwai

Surprise Donations

During the past year HFACT has been the recipient of two unexpected donations.

In February, a sheep shearing demonstration was held in the pavilion at the opening of the 2004 Royal Canberra Show.  Over the 3 days of the show volunteers from the Spinning, Dyeing and Weaving Section spun the wool into yarn.  More volunteers from the Craft Section then knitted squares from the wool and crocheted them together to make a quillow (a quilt that ingeniously folds up to become a pillow), shown in the photo opposite.

Once the quillow was complete, a silent auction was held and Geoff Cannock, the CEO of the Royal National Capital Agricultural Show Society, was the successful bidder with the final bid of $276.00. This amount was then donated to HFACT.

Then just recently, the Australian Bureau of Statistics Social Club held a charity Trivia Night.  From that we received a donation of $214.44

So a big thank you to the all the crafts people from the Canberra region who helped make the quillow and also to the ABS Social Club for these donations and their support for HFACT.

L-R Val Walker, Anne Jordan, Janet Temperly, Petronella Wensing

Joe Guarnieri accepts a cheque from Geoff Cannock in return for the quillow.

Counsellor’s Report

It is now 5 months since I began as Counsellor HFACT and it has been great to meet with so many of you. I have tried over this time to ‘touch base’ with many on the HFACT Contact List.  Some of you I have not been able to contact, possibly because of change of address or phone numbers.  If you have been inadvertently overlooked and would like to meet, please contact me.

For me, the last 5 months have been interesting and rewarding.  Alongside catching up with many of you, I have also endeavoured to establish a knowledge of, and personal contact with, people and organisations relevant to living with haemophilia and establishing a network of connections with these people and organisations.  This encompasses community organisations, health and government departments, and those working within the hospital environment.

A three day visit to Royal Brisbane and Royal Brisbane Children’s Hospitals in March was particularly beneficial and has given me an appreciation and overview of haemophilia treatment centres.  

In relation to our treatment centre at Canberra Hospital, I will be available there every Thursday morning.  Now that Liz Gregg, our newly designated RN for the centre is on board, it is good to be establishing a working relationship with a co-worker.  We are looking at ways of improving care and procedures within the hospital environment for people with haemophilia.

The home office is now also up and running with phone and computer access.  This is great as it increases my options for meeting with people.  I am happy to see people at the Haemophilia Treatment Centre, at the home office, in the workplace or over a cup of coffee anywhere. Please don’t hesitate to contact me if there are any issues or concerns you would like to talk about.

Thanks to all of you who have assisted me in settling into the position.

Don’t forget the mid-winter dinner on 21st August. I look forward to seeing many of you there.

Clare Reeves

HFACT Counsellor

Mobile               0409 830472

Email                Counsellor@hfact.org.au

Mid-winter Dinner: Saturday 21^st August

It may seem that all HFACT does is have dinners, although it’s been four months since the last one.  Nevertheless, the mid-winter dinner is scheduled for 21^st August, at Ron and Jenny Lees’ house, at 7pm.

The event is a purely social one, with no agenda other than meeting other members of the group, enjoying a meal and having a good time.  Everyone is welcome, including children.

We would especially like to encourage those members whom we have not seen for a while.  The group has a number of new families and this would be good opportunity to meet with them and show them our support.

As for our past mid-winter dinners, it will be a coordinated bring-a-plate-to-share affair. So if you intend to come please call Ron or Jenny to discuss the menu.

Please RSVP (phone 6288 8115) by Friday 20^th August if you are coming.  The Lees’ address is: 48 Crowder Circuit, Stirling.

2004 Annual General Meeting: Wednesday 13^th October

Although it is several months away, we would like to advise the date of the HFACT AGM, so that people can mark it in their diaries.

The venue is yet to be decided (we will probably have it over another dinner!) and you will be advised in a formal AGM notice closer to the date.

Please consider attending. I know that AGM’s are not the most exciting occasions, but your committee has been working hard this year on behalf of all people affected by bleeding disorders in the ACT and surrounding region to:

·   Select, employ and support our new counsellor;

·   Support the Haemophilia Centre’s new RN, Liz Gregg;

·   Liaise with the administration of The Canberra Hospital to improve services at the Canberra Haemophilia Treatment Centre;

·   Liaise with and report to the ACT Government with regard to our funding;

·   Participate in the blood products review and subsequent lobbying of government;

·   Establish new email facilities and create our web site;

·   Participate in a  number of other activities such as Haemophilia Awareness week, conferences, and social events.

So it would be good to see people show support for the committee by attending the AGM

Ron Lees

VP, HFACT

Communicating with Child Carers and Teachers

We recently welcomed a new family with a young boy called Mitchell to the group.  As part of their support for the family, Clare Reeves and Liz Gregg visited the Mitchell’s day care centre to liaise with the staff there. At the centre they saw on display a poster created by Mitchell’s parents to assist the staff.

Clare was so impressed with this idea that she asked for it to be included in the newsletter as an example of how parents of children with bleeding disorders can communicate in clear and simple terms the details of their child’s condition to teachers and carers.