Noticeboard
Congratulations Debbie Colyer on your Order of Australia for your work with PKU
Read the article > Link
Reminder:
Registrations for the National PKU Youth Camp are closing. If you haven't already registered your interest by the deadline of 31st January 2012 please get in touch with the us as soon as possible.
Membership Renewals for 2012
There are many benefits to being a member of the PKU Association on NSW Inc. Most importantly you will be kept informed of, and involved in PKU related news and events via our website, email and newsletter. Plus you will have access to the Members Area of the website which offers easy online management of your profile and access to recent and social news. Please be advised that if membership is not received by March 2012 your membership will be suspended and you will no longer receive the benefits of being a member.
Subscription Form > Download
Annual General Meeting (AGM) Sunday 19th February
Our AGM is being held Sunday 19th February and we would like all of you to attend. Your involvement is always welcome and can be a rewarding use of your time and skills. Positions on the Committee are President, Public Officer, Treasurer, Secretary & Editor. Sub-Committe members are always needed to assist with Fundraising, Youth Camp, Gala Dinners and providing new ideas and awareness of PKU to the greater community. Please make an effort to join us at this years AGM and support your association so we can continue supporting you. Attached are our 2012 AGM Nomination form and invitation.
AGM Invitation & Nomination Form > Download Committee Position Descriptions > Download
Annual Rotary Charity Golf Day Tuesday 13th March 2012
Come and enjoy a fun filled day at the prestigious Pennant Hills Golf Club.
Download the form here
Rotary Golf Day Flyer > Download
Kuvan announcement - Dec 2011
It is with great disappointment to share with you the PBAC decision which was to reject the Kuvan submission this time "because of uncertainty around the clinical place in therapy and high and uncertain cost effectiveness." While this is a disappointing set back, Merck Serono will continue to work with the PBAC to pursue access to Kuvan for Australian patients in the future. Merck Serono have had preliminary discussions with the PBAC following the November meeting, and they have suggested some potential ways forward for future submission. They will keep us informed as they progress this in the new year.
What is Kuvan?
Kuvan contains sapropterin which is identical to the body’s own natural tetrahydrobiopterin (BH4) except that it is made in a laboratory. BH4 is used by the body to process phenylalanine in order to build another amino acid called tyrosine, which is a building block for several important brain chemicals. People with PKU have abnormally high levels of phenylalanine in the blood, which can be harmful. Kuvan is used together with dietary restrictions to reduce phenylalanine in the blood. Not everyone with PKU responds to Kuvan but patients who do respond may be able to tolerate more phenylalanine in their diet than without treatment. Kuvan is also used for patients with a condition known as BH4 deficiency. Kuvan is a tablet which can be taken whole or dissolved in water. The dose of Kuvan will vary depending on the weight of the person.If you, or your doctor would like any further information please do not hesitate to contact the Medical Information department on 1800 633 463 or medinfo.australia@merckgroup.com
We were contacted on several fronts by Merck Serono, the local pharmaceutical company who are the distributor of Kuvan in Australia.
Merek Serono recently submitted an application to the Australian Pharmaceutical Benefits Advisory Committee (PBAC) to list Kuvan on the Pharmaceutical Benefits scheme. The submission was reviewed by the PBAC in their November meeting.
As part of the submission process, a consumer feedback process was set up to capture comments from those families that will benefit from Kuvan being made available and affordable in Australia.
The closing date for consumer submissions was October 5th. Even though Merck Serono have certification to provide Kuvan in Australia this does not allow for Kuvan to be available under the PBS.
A tribute to Dr Richard Koch (1921 – 2011)
"Dr Richard Koch was truly an amazing and dedicated doctor... he gave his PKU patients a great life, hope and so much of his knowledge and especially his time answering thousands of e-mails from adults and families who are dealing with PKU or other metabolic disorders around the world."
Read Debbie Colyer's tribute to Dr Koch (click to download here).
Fate Special Foods released through Vitaflo - ‘The Fate Story’
Eileen Green is a mother of two daughters with PKU, Fate & Kate. Having difficulty in cooking low protein food for her daughters she developed her own low protein flour & cake mixes.
The Fate All Purpose mix was first developed in her own kitchen using a blend of low protein starches & other ingredients. To prefect her low protein dishes using this mix Eileen painstakingly tried out recipe after recipe, with her husband and her daughters acting as food tasters.
Fate Special Recipes is a personal collection of over 200 recipes and helpful hints developed by Eileen. The recipes have all been tried and tested by Eileen and are an excellent resource.
Vitaflo currently have an introductory offer of the Fate Products on their
order form which you can download here.
Bridie & Paul Melham creating awareness of PKU in Pregnancy magazine
Download and read this article here
Pennant Hills Rotary Club recognises PhD student for brain illness research
Pennant Hills Rotary Club presented PhD student Naz Al Hafid a Rotary Health Research plaque which recognises her work on a little-known brain killer.
The plaque recognises her work to further the research of phenylketonuria (PKU), which the Rotary club also helps fund.
Club president Terry Pankhurst said the club is very excited to have Ms Al Hafid on board.
Read the full article from Hornsby and Upper North Shore Advocate.
Blackmores Running Festival
Six everyday mums set out on their own individual personal fitness goals, sweating it out and doing their best to complete the gruelling Blackmore's Running Festival course over the Harbour Bridge, around Sydney's CBD and finishing at the Opera House steps on Sunday 18th September 2011.
As all of the ladies live by the mantra "Your life does not get better by chance, it gets better by change" they created the first inaugural "TEAM PKU” to raise much needed funds for PKU Research as well as promoting awareness of Phenylketonuria.
The Blackmore's Running Festival accommodates all types of runners and has 3 different race categories: 21km Half Marathon (which Paula Ryan, Nicole Quirk and Jacqui Behnke participated), the 9km race (which Renee Ellison, Cathy Cafe, Sandra Hamilton and Belinda Haes participated) and the 4km family walk on the day.
Through the generosity of their family and friends they raised a whooping $1880 for the cause. Due to the success of the race and fundraising effort they are looking for like minded individuals to join the team, support the cause and get fit in the process next year.
After the race Belinda Haes said "Struggling through a race is nothing when compared to the challenges faced by those individuals living with PKU. Running for a great cause such as this can help put things in perspective." Belinda dedicated her run to her 1 year old niece Pippa Melham who has PKU.
On behalf of the PKU Association of NSW Inc we would like to thank the Ladies, their family and friends for the tremendous support, awareness and advocacy of PKU.