PKU Association of NSW | Businesses

PKU Association of NSW

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22.01.2022 My daughter always counts down the days until her Bestie Maddy’s birthday as the family always cater for PKU. This years birthday creation was a Monstera CFL yellow cake recipe, a total of 7.2 grams of protein for the whole cake. Complementing this amazing cake were individual cupcakes at 0.6g each and also PKU Donuts at 0.1g per donut.... A huge thankyou to The amazing baker Baking Lavie Zoi Barber who is my daughters greatest advocate and her love of baking is second to none If you are looking for a special PKU cake Zoi is up for a challenge.

21.01.2022 Please have your say! Submissions close tomorrow.

21.01.2022 Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. As PKU is a rare disease, lets create Awareness through our friends, family and the greater public today of Phenylketonuria. What is Phenylketonuria? PKU is a very rare genetic disorder which affects one in ten thousand babies born in NSW each year.... PKU or Phenylketonuria affects the liver cells which make people affected unable to break down the protein in foods. This when left untreated can lead to mental retardation and other debilitating affects over time. PKU is treated with a low protein diet and supplements that would be insufficient from the diet alone and monitored closely with regular blood tests. This diet is recommended for life and is very restrictive on the food and quantities permitted. In fact, people with PKU are unable to eat meat, fish, poultry, nuts, cheese, bread, eggs, ice cream and dairy products. Share this post and Raise Awareness of PKU. Rare Diseases Day Sunday 28th February 2021 - https://www.rarediseaseday.org/

19.01.2022 Today is Rare Disease Day! Show your support for the rare disease community by hitting the and Share buttons! An estimated two million Australians live with a rare disease. 300 million people globally live with a rare disease. #RareDiseaseDay #PKU #Phenylketonuria

18.01.2022 CHRISTMAS ADVENT CALENDARS FOR AUSTRALIAN LOW PROTEIN CUSTOMERS ONLY! Due to the restrictions caused by COVID-19 this year Vitaflo Australia can deliver your complimentary Christmas Advent calendar directly to you! Get in quick as stock is limited and December 1 is just around the corner!! Simply provide your name and address to email [email protected] to secure your Christmas Advent Calendar TODAY!!!

18.01.2022 Notice of Annual General Meeting (AGM) - https://mailchi.mp//notice-of-annual-general-meeting-2020-

17.01.2022 We are excited to be delivering the 2021 PKU Association of NSW welcome packs to the Children’s Hospital at Westmead. Thankyou to our lovely friends Barbara, Gloria & Julie for crocheting our little platypus mascots.

17.01.2022 Events can be difficult for low protein diets. It’s always lovely when a venue makes a special effort. Contacting them in advance means they have time to prepare. Look at this amazing low protein meal for a school graduation dinner. Thanks Doltone House!

16.01.2022 What a lovely surprise in the mail this week from Nutricia Metabolics Australia. The cookbook will definitely come in handy.

14.01.2022 What an absolute cracker of a night! Stay tuned for offical total raised..

14.01.2022 A small video grab of the world's first PKU Documentary Feature Film examining a world of food from the perspective of those who don't have the choice. So very proud of the resilience of all our loved ones throughout their individual PKU journey.... # Click watch trailer for video grab #... http://sowhatcanyoueat.com

10.01.2022 Nearly time for lunch, auctions and raffles... #PKUGOLFDAY2020 #PKU

09.01.2022 Our new website is up and running Head on over to www.pkunsw.org.au to check it out

09.01.2022 Thank you to everyone that attended our annual PKU Gala dinner last night it was an absolute blast. So much fun had by all and a wonderful outcome that will be presented formally soon. Research is our aim and we hope to continue funding our researchers that work so hard to find a cure for Phenylketonuria. With that said we will have official pictures in a few days so watch this spot once again a huge Thank-you to all our supporters and association that work so hard to make this happen. Also a big Thank-you to Ottimo House such a big task and you guys make it look so easy

08.01.2022 As Bayview Gluten Free products were phased out of Coles supermarkets last year I was ordering the Veggie nuggets (0.8g per nugget) direct with the supplier at Taree. Helen rang me yesterday to advise that they have set up a Sydney based shop (GF outlet) opening in Silverwater at 94-98 Asquith street, NSW 2128 which is in conjunction with Fine Fettle Foods. The Outlet will open this Saturday 15th from 9 am to 1 pm and Monday to Saturday 9 am to 1 pm.

08.01.2022 Last night the Amazing Dr Minal Menezes was the proud recipient of the Rotary District Vocational Award for PKU research. The Rotary Awards for Vocational Excellence were inaugurated in 1982. VOCATIONAL EXCELLENCE honors outstanding contribution by individuals or small teams of individuals for significant advancement in their vocational field in Australia.... A massive Thankyou and congratulations to Dr Minal for her ongoing and tireless work for the PKU Association and the PKU community.

08.01.2022 For anyone that is interested this a documentary I have been following it’s release It’s due to come out Nov 1st. So What Can You Eat? is a documentary film examining the world's growing obsession with food and the freedoms it brings from the perspective of those who don't have the choice. The relationship we have with food extends far beyond its impact on our physical health or personal satisfaction. Underpinning every decision we make surrounding food lies a primal right to... choice, and across all cultures around the world, food, and the ritual of eating, is directly used as a means of bringing communities together. Presented by filmmaker Jack Everitt, So What Can You Eat? examines the stories of the rare individuals who follow one of the world’s most restrictive diets in a lifelong battle to avoid severe and irreversible brain damage. In doing so he tasks his close-friend, and fellow filmmaker, Liberty Hanson, with trialing the diet for 1 whole month. Through Liberty’s struggles we discover what it really means to have freedom of choice, and how recognising these freedoms can empower us to take complete control of our health and mental wellbeing. See more

06.01.2022 Hi PKU families Just a heads up the new pku handbook is out online if you haven’t already seen, check it out https://www.hgsa.org.au/documents/item/48

05.01.2022 Sharing this important update from the MDDA: MDDA Update - LP Product Supply and Coronavirus No Change - Due to the Stage 4 restrictions introduced in Victoria, MDDA have been in contact with each of the suppliers of medicines, supplement/formula prescription products and low protein food suppliers for an update. ... The companies have advised that there are no current stock supply issues or perceived shortages. The companies will restrict orders to usual quantities to ensure the supply remains as normal. Some low protein food supplies are currently out of stock and will be replaced as soon as possible. Please allow additional delivery time allowing for possible short delays. Always contact your clinic for any urgent medical concerns. We will continue to keep you updated with any updates or communications. For other general queries please do not hesitate to contact [email protected]

04.01.2022 MDDA's first ever virtual @Home Retreat is a little over a week away and will be a jam packed weekend full of interactive online sessions, scientific presentations, and educational workshops. There are sessions for people of all protein Inborn Errors of Metabolism and ages - including our PeeKabU kids virtual scavenger hunt and buddy program- there will be something for everyone! To read our full detailed program and register before Monday 5th October click here https://www.facebook.com/metabolicdietarydisordersassociation/

04.01.2022 Please throw your support around our first Fundraising Event of 2020 - PKU Charity Golf Day which will be held at Pennant Hills Golf Club on Tuesday 27th October 2020. Please contact Terry Pankhurst on 0418418952 or [email protected] to register. If you have the capacity to donate if you are unable to attend please contribute via https://www.pkunsw.org.au/get-involved/donate as all donations over $2 are tax deductible. ALL FUNDING RAISED WILL GO DIRECTLY TOWARDS AUSTRALIAN PKU RESEARCH

03.01.2022 Dear PKU families It’s been a tough year for everyone in our community.... Our committee has decided that this year we will not be holding our Christmas party,as it will be to difficult to comply with social distancing rules at venues with our numbers. Hoping we can arrange something in the new year and we can all get together soon. Hoping you are all staying safe and healthy

02.01.2022 Some things are worth waiting for.....