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| HFACT Newsletter March 2007 |
HAEMOPHILIA FOUNDATION
AUSTRALIAN CAPITAL TERRITORY
INCORPORATED
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GPO Box 936 Canberra City ACT 2601 |
NEWSLETTER
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Fred
Wensing receives Australia Day Award
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Fred receives the
award from Susan Linacre, acting Australian Statistician
In January our President, Fred Wensing, received an Australia Day
Achievement Award from his employer, the Australian Bureau of
Statistics, for services to the Haemophilia Community in the ACT. This
is an award granted by Government departments, in conjunction with the
National Australia Day Council, to their staff.
I was honoured to be able to attend the
ceremony along with Clare
Reeves, Maria and Chris Wensing.
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Fred Wensing has been a central pillar of
the Haemophilia Foundation of the ACT. He was a founding
member of the committee that created the original Haemophilia Support
Group of the ACT in 1984. Since then, Fred has served on the
committee for all but two years in one capacity or another, even at
times serving in more than one position at once. Fred was our Treasurer
from 1984 to 1993 and President from 1992 until 2003.
After a short sabbatical, Fred again became President in 2005.
Additionally, Fred has spent many years serving on the Council and
Executive of the HFA as an ACT delegate and as the national Treasurer.
L-R: Chris, Maria and Fred Wensing
with Joe Guarnieri at the award
presentation
I'm sure that you will all agree that Fred is a well deserved
recipient
for such an award. It was great to see such a valued member of our
community honoured in this way.
Congratulations Fred, on such a prestigious achievement.
Joe
Guarnieri
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HFACT Committee for 2007
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At the HFACT Annual General Meeting in October the following committee
members were elected for 2007:
President:
Fred Wensing
Vice-President:
Simon McMenamin
Treasurer:
Stephen Wells
Secretary:
Joe Guarnieri
HFA Delegate:
Chris Wensing
General Committee members:
Terri Guarnieri
Lorraine Saunders
Vera Wells
Maria Wensing
Katherine Wills
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(seated) Joe, Stephen, Simon and Fred,
(standing) Maria, Chris, Terri, Lorraine and Vera (Katherine Wills not
pictured)
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National Haemophilia Conference
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The Hyatt Hotel Canberra will host the 14th Australian & New Zealand
Haemophilia Conference from Thursday 4th to Sunday 7th October 2007.
The planning and programme for the conference is progressing well and
we are on our way toward a great conference. The exciting multidisciplinary
programme will feature presentations by Australian, New Zealand and overseas
experts on current and future issues affecting people with haemophilia,
von Willebrand disorder and related inherited bleeding disorders.
Professional workshops will be held on Thursday, the first day. The main
conference starts that evening and continues through Friday and Saturday.
On the Sunday, workshops are held for people with a bleeding disorder and
their families. Sunday starts with separate Men’s or Women’s Breakfasts.
Workshops on Sports, Building Haemophilia Organisations and Families will
follow. Other workshops may be run depending upon the requirements of
our members.
Youth delegates aged 14 or over are encouraged to attend the conference.
They will attend mainstream conference sessions on Friday and Saturday and
any of the workshops on Sunday morning. An offsite adventure activity for
youth and junior delegates (under 14) will be held on Sunday after the last
morning workshop and will finish early on Sunday afternoon.
The Gala Dinner on Friday night at the Hyatt will be a great night filled
with entertainment and a chance for people to catch up with old friends and
meet new ones.
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Conference topics will include:
Ethical issues
Quality of Life
Inhibitor development, management and care
Prophylaxis controversies
von Willebrand disorder
Musculoskeletal issues
Complications of Ageing
Hepatitis C treatment and care
Women’s health
Reproductive technologies
Care of children with bleeding disorders
Exercise and Sport
Helping families manage bleeding disorders better
Transition to adulthood
Data management for clinical management, blood product demand and supply planning
If you have not received a conference brochure, but would like one,
or you have a query contact the HFA on 1800 807 173 or email Natashia Coco at:
ncoco@haemophilha.org.au
We look forward to having a successful conference in Canberra.
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Conference Volunteers
A conference as large as the Australian & New Zealand
Haemophilia Conference requires a huge amount of planning
and effort to be staged successfully. Although most of
the organisation is being conducted by the HFA and professional
event managers, a community based conference such as this
cannot be run without the assistance of local volunteers.
As well as making visiting delegates feel welcome, and seeing
that their needs are met, there are always many aspects where
volunteers can help.
HFA/HFACT will need assistance in the lead up to the
conference and during the conference itself and will be
calling for volunteers later in the year. Please consider
acting as a conference volunteer.
Contact the committee
or Clare Reeves if you can help.
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Get well soon!
Damian Wensing is currently undergoing chemotherapy for
lymphoma of the liver. He has been working in Melbourne for
the past nine months and they discovered the lymphoma as part
of the tests associated with his enrolment at the Haemophilia
Centre at the Alfred Hospital.
The treatment regime is going well, and I am sure that you will join
us in wishing Damian a speedy recovery. Our thoughts are with the entire
Wensing family during a very stressful time.
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Teaching in Ghana
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Thanks Len
Last year, I was very happy to be a little involved with Len and Mary Lou’s
preparation for a trip to Ghana. I asked Len, that when he returned, would
he write an article for the HFACT Newsletter on his experience. And here it
is; a wonderfully fulfilling adventure!
Clare Reeves
Counsellor, HFACT
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The location of Ghana in West Africa
Source: http://en.wikipedia.org/wiki/Ghana
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Where’s Ghana?
Six months ago, my wife, Mary Lou and I knew little more than that it
was in West Africa. Now, we know: that it was the source of the thousands
of slaves for Britain's nefarious slave trade to the Americas; that 2007
commemorates the fiftieth anniversary of Ghana's independence from being
a British colony.......... and much more.
Mary Lou and I spent a month as volunteer teachers there in October
2006. A condition of our placement was that we needed to have refrigeration
at our accommodation. I have moderate haemophilia and chronic hepatitis C
and therefore needed to keep my blood product and interferon refrigerated.
But nothing is certain in life. Though we had access to a fridge,
we were not told that every 2 1/2 days on a rotation basis every region in
Ghana had the power cut for 12-15 hours to reduce the consumption.
Fortunately, the recombinant was not noticeably affected but the
interferon's effectiveness was lowered.
The Orphanage/Preparatory School where we taught was some 5 km from our
accommodation. Most of this we walked each day and arrived at the school in
a lather of sweat. This was the way we would be all day because the orphanage
had no electricity to run fans to cool people off and, for that matter , neither
did they have running water. But , oh what joy there was in the kids in their
love of learning!
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In a small way we were able to contribute to this desperately poor
country. With the support of our family, friends and my school in Canberra,
we were able to expedite the construction of an extra classroom at the school,
which we think will make a difference.
Mary Lou adds: Yes, it was as Len describes: so challenging but an
extra-ordinarily rewarding month. Len's haemophilia and hepatitis C status were
not barriers to our adventure. If a situation occurred that we did not feel
we could deal with, we knew that we could fly out for treatment elsewhere.
If you don't test the waters how can you know that you can't swim
through them?
Len Minty
Ghana Orphanage Appeal
Len and Mary Lou will return to Ghana around July this year to facilitate
another project at the orphanage, involving the digging of a well and the
installation of electricity.
They are currently fundraising for this purpose. Mary Lou is making
biscuits for sale at the markets at CIT on Sunday mornings, with all proceeds
going to the Ghana appeal. If anyone would like to make a donation or purchase
biscuits, Len and Mary Lou can be contacted on phone 6286 5113 or email:
lenandmarylou.minty@gmail.com
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Counsellor’s Report
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I have been working a lot recently in the area of hepatitis C and haemophilia.
The two Hepatitis C Focus Groups in the ACT facilitated by Suzanne O' Callaghan and
myself went well. Thank you to those who participated.
Also this month, I attended a Heplink Forum - "The HCV Treat ment Journey", in
Queanbeyan, organised by the Greater Southern Area Health Service. I was also present
at the inaugural Hepatitis C Network Meeting at the ACT Hepatitis C Council in O'Connor.
Both sessions proved to be valuable in terms of meeting and liaising with other professionals
in the Canberra region and providing up-to-date information. If anyone would like to know more
detail or receive current literature, please let me know.
In a similar vein, HFA has just produced an excellent information booklet called
“Hepatitis C: - Information for people with bleeding dis orders - No. 1”. This will be
sent to all members in the very near future. If however, you do not receive one or would
like more copies, please let me know.
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I would like to let everyone know that I will be on leave from 4th May till 11th June.
During this time social worker Jane Keany will assist HFACT with any counselling issues
that arise. Jane worked for some time in the Gilmore Clinic at the Canberra Hospital and is
currently at the Interchange General Medical Practice and also at a private counselling practice.
Jane can be contacted on 6161 1605 or 0402 222 408. Please remember that Liz Jarvis is available
at the Haemophilia Treatment Centre every Thursday and will liaise with Jane if necessary.
Clare Reeves
Counsellor, HFACT
Phone: (02)6255 6779 or 0409-830472
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Let Us Know Your Experiences
As part of our advocacy role, representatives of the HFACT meet
from time-to-time with the service providers at the Canberra Hospital
to discuss treatment issues.
We would like to hear about your experiences, both good and bad,
so that we can include them in our discussions. The objective is to
maintain and improve access to treatment for all persons with haemophilia
and related bleeding disorders.
If you have any experiences you are prepared to share with us,
write to the President
or Counsellor of HFACT.
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Acknowledgement
The Haemophilia Foundation ACT would like to acknowledge that our newsletter has been partly funded through funds provided by ACT Health.
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