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.
Team MDDA chose 28th June for our mini LowProHighTea to raise further awareness and to pay tribute to the vision of those who have pioneered and expanded neonatal screening.
Our LowProHighTea consisted of delicious fruits, low pro cookies, cupcakes, biscuits and tea/coffee (with milk alternatives of course!). A combination of phe free and lower protein snacks!
Thank you to everyone who has pledged their support so far and donated to our Team. Donations are fully tax deductible! 100% of these funds support the MDDA to deliver a range of initiatives, advocacy, programs and support to all Australians living with an IEM.
Donate to Team MDDA here - https://thegreatproteinchallenge.com.au/donations/team-mdda/
"Really opens up your eyes in a new light, not just doing it for my daughter but walking in her shoes. I'm glad I did it"
A great way to help #makesomenoiseforpku is to PLAY or PLEDGE in the Great Protein Challenge. The Challenge has now been extended into June so there is still time to play. Strive to eat under 10 grams of protein to help raise awareness and funds in support of people living with rare genetic metabolic (protein) disorders, which includes PKU.
You can either:
PLAY - Take part in the Challenge and play by yourself or sign up a team!
PLEDGE - Support who you know participating in the challenge by helping them reach their fundraising goal!
Take on the Challenge TODAY and see how #lowpro can you go! Visit thegreatproteinchallenge.com.au...
It is important to us that our generous supporters know the real difference and the impact of their GREAT donation!
100% of every dollar donated to MDDA helps fund our Support Programs, Advocacy & Awareness and Research & Clinical Trial Initiatives!
PLAY or PLEDGE to show your support! 🍏 🙌 thegreatproteinchallenge.com.au...
It was 12th July 2019, when the Yuan family welcomed a beautiful baby boy into their world. Following newborn screening River was diagnosed with PKU. Soon after, his parents found a ‘new best friend’ for River – a rare disease medication that was recently added to the PBAC known as Sapropterin or Kuvan – which was listed after much advocacy and hard work by patient advocate and support group MDDA.
Kuvan is currently only available to children in Australia, leaving our rare adult population with nothing other than an ‘impossible lifelong diet’ to help protect them from the toxic amino acids found in protein that harm their brain. There is no cure for PKU!
Our “Make Some Noise for PKU” campaign is about advocating for access to this same treatment (and all available treatments) for adults with PKU.
MDDA thanks everyone who has supported our PBAC submission to get access to life changing drug therapies for PKU adults and now that consumer comments have closed, we will continue the dialogue with PBAC in the lead up to the decision expected in August. We are hopeful that Adults will be provided with the same opportunity that is extended to children just like little River, whose life was put on a different path thanks to him being given the opportunity to respond to a treatment to help manage his PKU.
We will continue to #makesomenoiseforpku so that ALL treatments can be available to ALL people with PKU.
Read River’s story here- https://mdda.org.au/river-yuan/
To find out more visit https://mdda.org.au/makesomenoiseforpku...
For most people the start of winter means enjoying afternoon treats like this! Unfortunately not for those with PKU/IEM 🙁 A small hot chocolate and a scone with jam and cream is more than double the protein allowance of those on a low protein diet!
There is multiple ways to get involved in the Great Protein Challenge to help raise awareness for the individuals living with a protein IEM!
EXTENDED INTO JUNE!
-Sign up to PLAY
-PLEDGE your support
-Contact your local MP to take on the Challenge
-Reach out to the media
#howlowcanyougo #greatproteinchallenge #lowpro...
A big shout out to all our amazing players and teams taking on the Great Protein Challenge today! We are so grateful for your support and raising awareness for all those living with PKU/IEMS! 😁💪
The Great Protein Challenge is now running into June! It's not too late to change your PLAY date, or sign up to take on the Challenge yourself! #howlowprocanyougo #thegreatproteinchallenge #lowpro thegreatproteinchallenge.com.au...
“In terms of the drug therapies being available to only under eighteens at the moment in Australia, I find that quite unfair, like unjust, almost discrimination. It would make a huge difference to my life if I was able to take some sort of drug therapy.”
PKU Adult and Mum Katy talks about her experiences and managing two pregnancies before treatment was made available for maternal women living with PKU.
Katy’s motivation is inspiring and we’re so proud to see her excited about her future, but Katy highlights all too well the struggle that PKU Adults face knowing that there are effective treatments available that could be life changing for everyone but currently they are not available on the PBS.
Help us to continue to #makesomenoise for PKU Adults by commenting and sharing this video to educate others on the challenges of living with PKU.
You can find more information on how you can help by visiting mdda.org.au/makesomenoiseforpku...
PKU is for life and there is no cure. Treatment is available but for the majority of PKU adults in Australia, access is limited. For many of these adults, they struggle to manage and this video is a compilation of how many of them feel.
MDDA’s Make some Noise for PKU campaign is about highlighting the inequities that come with having a rare disease such as PKU and not having access to all available treatments to help ease the burden. Whilst this is not the norm for all people living with PKU, it is certainly a very true representation for many that are struggling with the day to day management and often feeling overwhelmed by the enormity of managing and living with their PKU.
HOW CAN YOU HELP? Now is the time to rally behind PKU adults and Make Some Noise! View here the many ways that you can help advocate https://mdda.org.au/makesomenoise-advocacy/...
We have been so thrilled and grateful by the amount of support the 2022 Great Protein Challenge has received so far! We have loved the enthusiasm and give a HUGE THANK YOU to those who have pledged or played already!
We all know that newborn screening has been a truly revolutionary milestone in public health. We now have 2 important life changing awareness days to celebrate, International PKU Awareness Day and the second International Neonatal Screening Day both celebrated on the 28th of June, the birthday of Dr Robert Guthrie. This day provides an opportunity for MDDA and our IEM community to celebrate and pay tribute to the vision of those who have pioneered and expanded neonatal screening.
So with this in mind, we are extending the Great Protein Challenge through to the end of June, helping us to Make Some Noise and continue raising awareness for all IEMS!
With an election looming it is also a great chance to reach out to your Federal representative and ask them if they can support us and play along for a day.
There has never been a better time to get involved and help raise awareness and what better way than signing up to take part in The Great Protein Challenge!
PLAY or PLEDGE by visiting thegreatproteinchallenge.com.au...
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 🌏...