Join the rare group of Australians living with PKU, and strive to eat under 10 grams of protein to help raise awareness and funds during the Great Protein Challenge in support of people living with rare genetic metabolic (protein) disorders.
Join us in our advocacy efforts supporting all PKU Adults to have access to safe, effective, and registered treatments for use in Australia. Sign up for the Great Protein Challenge today or view our Make some Noise campaign page to support our advocacy initiatives.
Raise Your Voice to Your Local Federal Member of Parliament!
To help advocate on WHY access to current PKU treatment in Australia is UNFAIR you can raise your voice to your local Federal Member of Parliament. Leading up to the 2022 Election it is a great opportunity to raise awareness and understanding of PKU as all candidates in your electorate will be vying for your vote.
You can start by looking up your local Federal Member of Parliament (MP) here - https://www.aph.gov.au/Senators_and_Members. You can write to or visit your MP to share your story. Telling your story will capture their attention and put your personal experiences into real-life emotional context. With this we wish to highlight the importance of securing equitable treatment access for all Australians living with PKU.
By Making Some Noise, we can ensure PKU awareness becomes an important issue on the political agenda once new Parliament is elected! You can find a full helpful guide on how to engage your local Federal Member on our website here - https://mdda.org.au/makesomenoise-advocacy/
In 2021, MDDA conducted the PKU Australian MDDA Quality of Life Survey to hear from PKU Adults & families to better under the current challenges and hopes for the future of the Australian PKU community.
The information lead to a lot of interesting findings including the following:
• Over 55% say PKU impacts their ability to be effective in school/work/university
• Over 60% say PKU has affected their social relationships
• Over 90% find PKU restricts their life
This is why we are Making Some Noise to advocate for access to ALL treatments for ALL people with PKU.
To find out more and how you can help visit mdda.org.au/makesomenoiseforpku...
"I was called in to an office to speak to a doctor because it was found that I had white brain matter changes in [a] MRI... So that's quite scary that dietary therapy and sticking to it and following all the guidelines still results in suboptimal outcome."
PKU Adult Bianca has been on diet her entire life. 6 grams of protein is all she can "safely" metabolise per day. In her story, Bianca explains that whilst she is able to lead a well and healthy life, the difficult and relentless low protein diet still proves to be a challenge for her to upkeep.
Having access to different treatment options would be a game changer for PKU adults like Bianca, having positive impacts on social and physical wellbeing. Help us to #makesomenoise for PKU adults like Bianca - please comment and share this video and show others the challenges of living with PKU.
You can find more information on how you can help by visiting mdda.org.au/makesomenoiseforpku
Most people living with a protein IEM can only consume between 1-8grams of protein per day. It is one of the hardest diets in the world! Don’t believe us? Take the challenge and sign up for The Great Protein Challenge TODAY! Pick a date this May and see how #lowpro you can go!
Can’t take the Challenge? You can still show your support by PLEDGING and supporting someone you know reach their fundraising goal.
Visit thegreatproteinchallenge.com.au to sign up to PLAY today!
“I was 23 when I actually understood the impact that PKU would have on my body and my ability to function in a day to day like”
The physical effects are apparent, but the mental health complications and mood swings that high PHE levels have had on herself, her work and her loved ones are the greatest challenge for Monique. Whilst currently on diet, Monique knows that diet alone is not enough. Every day is a struggle. Access to new and emerging treatments will change the lives of PKU adults such as Monique. Help us to #makesomenoise for PKU adults like Monique - find out how you can help by visiting the link in our bio.
Did you know that a Hot Cross Bun contains around 6g protein and a chocolate Easter Bilby contains 5g protein? Most people living with PKU can only consume between 1-8 grams of protein per day.
Take The Great Protein Challenge for just 24 hours during May and see what it is like to walk in the shoes of those who live with PKU.
Help to raise awareness and funds for important research and support programs.
Visit thegreatproteinchallenge.com.au to PLAY or PLEDGE!
This May we will once again be running The Great Protein Challenge, a national effort where challengers strive to eat under 10 grams of protein to help raise awareness and funds to support people living with rare genetic metabolic (protein) disorders.
Most people living with a protein IEM can only consume between 1-8 grams of protein per day.
Up for the Challenge? Click PLAY! Take part in the Great Protein Challenge and find out if you can eat less than 10g of protein in day. You can play by yourself or sign up to a team.
Want to show your support? Click PLEDGE! If you know someone great participating in the challenge support them to reach their fundraising goal.
To sign up or find out more information visit thegreatproteinchallenge.com.au
#lowpro #gpc #howlowprocanyougo...
"We call ourselves the guinea pig generation"
Con’s story is one of experimental heartache as he shares his PKU journey. His on again off again PKU diet as an adult has impacted his quality of life and left him with a sense of regret and missed potential. Con's story is heartbreaking and inspirational as he stresses the importance of staying on diet for PKU adults no matter how hard it is! Con knows his overall wellbeing and quality of life would be improved with access to PKU treatments that are available around the world today, but unfortunately not here in Australia for adults like Con. Until that day Con will continue to do his best with diet alone as his only option – but this is simply not enough.
Help us to #makesomenoise for PKU adults like Con - find out how you can help by visiting the link in bio.
MDDA Important Announcement: Ensuring treatment access for all Australians with PKU
30 March 2022
Read this announcement online on our website at mdda.org.au
Join our online FB campaign page by clicking the link in our bio!
Today is International Rare Disease Day! Rare Disease Day takes place on the last day of February each year. A disease is rare if it affects less than 5 in 10,000 people, there are more than 7,000 rare diseases. This important international campaign aims to raise awareness amongst the public and decision makers about rare diseases and their impact on patients’ lives.
MDDA celebrate all of those who live with a rare disease. We are committed to improve understanding and awareness of all rare diseases and will continue to advocate for research and better treatment and support of all IEMs. #rarediseaseday #lightupforrare #mdda More information about Rare Disease Day can be found at rarediseaseday.org...
Introducing the inaugural Global PKU Patient Conference! MDDA are excited to help organise and host the 2021 Global PKU Patient Conference Friday 10th - Saturday 11th September, an around the world in a day virtual event experience! Come explore the latest PKU scientific endeavours from all corners of the globe. For more information and to register for the event visit globalpku.org/conference 🌏...
Latest Issue of MDDA Matters has been sent out! Look out for Issue #73 June 2021 which has some great articles including some lovely Member stories from IVA and PKU families. If you are a MDDA Member you can also access all our Newsletters on our website - mdda.org.au...
As summer comes to an end, it’s time for our IEM kids to go back to school or start school for the first time! We know that as IEM parents school can be very daunting in terms of school lunches, talking to teachers and what to do about supplements. This time last year, with the help of our community, we created a ‘School Starters’ resource on our website to help assist in this process. It’s a great resource filled with tips and tricks from people in the same position as you, including: Main questions about starting school, Sample letters for School/Teachers & Parents of classmates, IEM Kids school stories, Lunch Box tips, Online parent support group forum posts, a parents perspective, and much more! To view the resource visit - https://www.mdda.org.au/school-starters/ [LINK IN BIO]
We are always looking for new things to add to this resource so please comment any advice or resources you might have below!...
MDDA @ Home Retreat Registrations NOW OPEN!!
You might have seen in our most recent eNews that we have opened registrations for our first ever virtual @ Home Retreat! To register for this year’s FREE event click the link in bio. This event is for MDDA Members - visit our website for more information. 🖥💻...
New LowPro Inspo Video! – Ben & Bianca Make Coconut Sago Pudding!
After being a huge hit at our MDDA Retreat, you can learn how to make your very own Low Protein Coconut Sago Pudding at home! Watch The Grand Hotel Warrandytes Chef Ben teach @bianca.pku.life how he makes Coconut Sago Pudding, a delicious dessert that will be a huge hit with the whole family! Fun and easy to make, check out the video on our LowPro Inspo Channel on YouTube! (Link in bio!)
Would you like to become a LowPro Inspirator, we’re always looking for inspiring recipes to add to our LowPro Inspo YouTube cooking channel! Have a go at filming your favourite recipes in whatever style you like! If you’re interested please email [email protected], you can also find more information here https://www.mdda.org.au/lowpro-inspo/
Yesterday, June 28th, was International PKU Day! We hope that you spent some time celebrating all the great aspects of PKU that make you, YOU! Did you know?:
- Robert Guthrie, the inventor of the newborn screening test, was born June 28th, 1916
- Horst Bickel, the first to develop a low protein diet, was born June 28th, 1918
- Worldwide, approximately 35 babies are born every day with PKU. Of these babies only 35% are fortunate enough to live in a country where both newborn screening and access to lifelong treatment gives them a chance of a normal life. - Currently there is no cure for PKU
We hope that you all had a wonderful day celebrating everything that is special about having PKU!
For more information about #internationalpkuday visit http://www.pkuday.org...
Kylie shows us how to make her delicious Thyme and Caraway Focaccia!
This week on LowPro Inspo we have an easy and delicious recipe from Kylie! Check out the how-to recipe by clicking the link in our profile bio to learn how to make your very own tasty low pro focaccia! Thank you again to Kylie for filming such a great and informative video for us, we really appreciate it and love sharing everyone’s favourite recipes.
Would you like to become a LowPro Inspirator, we’re always looking for inspiring recipes to add to our LowPro Inspo YouTube cooking channel! Have a go at filming your favourite recipes in whatever style you like! If you’re interested please email [email protected], you can also find more information here https://www.mdda.org.au/lowpro-inspo/. #LowProInspo...
This week is National Volunteers Week, an annual celebration and opportunity to acknowledge the generous contribution of all our volunteers!
At the MDDA we would like to give a HUGE thank you to our Executive Committee Team, Monique Cooper Louise Healy Bianca Albanese Paige Moore, these amazing volunteers play an integral role in our success! They drive every program, initiative, lead our advocacy campaigns and oversee the governance of our association whilst managing their own families, businesses, employment and studies. Please join us in thanking and recognising their amazing efforts!
To find out more about how you can volunteer please visit our website at https://www.mdda.org.au/help/volunteer/. Thank you again to each of you who are dedicated to support, contribute and drive awareness of the MDDA and our members to the greater community. We cant do it without you!...
Today, May 12th, is International Nurses Day celebrated on the anniversary of Florence Nightingales birthday!
It is a great opportunity to celebrate all the hard work our metabolic nurses do to help make our lives living with an IEM more manageable! During these uncertain times nurses have been true superheroes and it is important especially now to not only celebrate, but also thank them for all the hard work that they do for us.
Here at the MDDA we would like to say a special thank-you to our very own Patient Pathways Telehealth Nurse Jo Campbell. Jo has been providing support and a comprehensive case management service for our patients and we can’t thank her enough for all the hard work she does to support our community! Today is a day that we say how grateful we are for all the metabolic and specialist nurses around Australia!...
Happy Mother’s Day to all the super IEM Mums out there! We want to give them a HUGE thank-you for all their hard work, love and support! Whilst this year we are spending Mother’s Day inside, we still hope that it is a day of love and celebration and that all our lovely mums are surrounded by cuddles and homemade gifts! We love you mums!...