PCD Australia

Watching Netflix to make sure I am awake for a PCD meeting 2 2.00 am Australian time with leaders of other PCD organisations across the globe.
PCD Australia PCD Support UK PCD Foundation

As the end of the financial year approaches, we would appreciate your support to help those who face the daily battle of living with Primary Ciliary Dyskinesia (PCD). Individuals with PCD endure many challenges, often spending numerous days in hospital. However, with your support, we can make a significant difference in their lives.

Why Your Donation Matters

Your donations fund vital work, research, and advocacy efforts aimed at improving the lives of those with PCD. Here’s how your contribution helps:

Fund Research: Support cutting-edge research to find better treatments and ultimately a cure for PCD.
Provide Resources: Help us offer essential resources and support to individuals and families affected by PCD.
Advocate for Patients: Aid our efforts in advocating for better healthcare policies and awareness.
Tax Benefits

All donations over $2 are tax-deductible, providing you with the added benefit of reducing your taxable income.

How to Donate

Visit Our Website: Go to the PCD Australia website to make a secure online donation.
Direct Bank Transfer: Contact us for bank transfer details if you prefer this method.
Paypal

Steps to Ensure Your Donation is Tax-Deductible:

Make Your Donation Before June 30: Ensure your donation is processed before the end of the financial year to claim it on this year’s tax return.

Join Us in Making a Positive Impact

Together, we can create a brighter future for everyone affected by PCD. Your generosity makes it possible to continue our crucial work and support those in need.

Donate today and help us make a lasting impact in the PCD community. Together, we can make a difference!

For more information or to make a donation, visit PCD Australia. www.pcdaustralia.org.au

Thank you for your support!

Happy National Volunteer Week! This week is a wonderful opportunity to celebrate and acknowledge the incredible contributions of volunteers who generously give their time, skills, and passion to make a difference in their communities.

For PCD Australia, National Volunteer Week is a perfect time to recognize and thank the dedicated volunteers who support the organization’s mission to advocate for and support individuals with Primary Ciliary Dyskinesia (PCD). Your efforts in raising awareness, organizing events, fundraising, and providing support are invaluable.

A Message for Volunteers
To all the amazing volunteers at PCD Australia and beyond:

Thank you for your unwavering dedication and the countless hours you put into making a difference. Your hard work, compassion, and commitment are truly inspiring. You play a crucial role in supporting individuals with PCD and their families, and your efforts help to advance research, raise awareness, and provide essential services. This National Volunteer Week, we celebrate you and the incredible impact you have on the community. Thank you for all that you do!

If you are interested in volunteering for PCD Australia email us on [email protected] .

"Happy Mother's Day to all the amazing moms in Australia! Your love, strength, and nurturing spirit make the world a better place. Today, we celebrate you and all that you do. Thank you for your endless sacrifices and unwavering support. You are truly appreciated and loved beyond measure. Wishing you a day filled with joy, laughter, and cherished moments with your loved ones. Happy Mother's Day!" 🌸💖🌟

On ANZAC Day, we come together as a nation to remember and honor the brave men and women who have served and sacrificed for our freedom. Today, we pay tribute to the ANZACs who fought with courage and determination, leaving behind a legacy of selflessness and sacrifice that will never be forgotten.

As we reflect on the hardships endured and the lives lost in conflicts past and present, let us also recognize the enduring spirit of mateship, resilience, and unity that defines us as Australians and New Zealanders.

On this solemn day, let us renew our commitment to upholding the values of freedom, democracy, and justice for which our service personnel have fought so bravely. May we never take for granted the liberties that they have secured for us through their unwavering dedication and sacrifice.

Lest we forget.

Happy Easter to all families from PCD Australia! May your Easter be filled with joy, laughter, and precious moments spent with loved ones. Thank you for being part of our community and for your ongoing support. Wishing you a peaceful and blessed Easter holiday!

REPEAT Trial

Hi everyone - for those who have been on the trial could I get some feedback on what you thought about it . One of the doctors is going over to Cypress soon to talk and would like to have some comments they can share whilst at the conference whilst they talk about the study - results are not in yet - this is just about experiences from both patient and doctors experiences .

Regards

Catherine

Good Friday Appeal at The Royal Children's Hospital, Melbourne is crucial for raising awareness and support for important research and care, such as respiratory health and conditions like PCD.

The respiratory team's dedication and efforts in caring for patients with PCD and other children’s conditions are undoubtedly invaluable. Their expertise and compassion play a vital role in improving the lives of those affected by these conditions.

Events like the Good Friday Appeal not only raise funds but also shine a light on the crucial work being done by healthcare professionals. Here at PCD Australia we are celebrating the efforts of the Royal Children’s hospital good Friday appeal , further emphasising the collective commitment to improving outcomes for individuals.

Congratulations to the staff at the Royal Children’s Hospital – Good Friday Appeal and the respiratory team for their dedication and hard work.

Please show your support so they can continue to provide outstanding care for all out little PCD warriors.

https://www.goodfridayappeal.com.au/
hospital

Catherine our President and Founder of PCD Australia , attended the Hope research dinner on the Gold Coast this weekend and had the honor of presenting a Research Grant to Dr. Andrew Reid Phd. Such recognition is a testament to the dedication and hard work put forth by individuals like Catherine, who advocate tirelessly for those affected by PCD.

The grant of $15,000 from PCD Australia, matched by the Lung Foundation Australia, demonstrates a commitment to advancing research into PCD. This support will undoubtedly contribute to further understanding and treatment of the condition, bringing hope to individuals and families affected by it.

It's indeed a proud moment when years of advocacy result in tangible support and recognition. The collaboration between organisations like PCD Australia and the Lung Foundation Australia is essential for driving progress in the field of respiratory health.

Congratulations to Catherine Kruljac, Dr. Andrew Reid Phd , and all involved in this significant achievement. Your efforts are making a meaningful difference in the lives of those impacted by PCD.

, Lung Foundation Australia Catherine Kruljac Lucy Morgan

When fasting with an illness like PCD, its important to trust your own judgement and speak to your doctor if you need further guidance or if you get symptoms while fasting.
If you become unwell during then you should stop fasting and speak to your healthcare professional.
The following are exempt from fasting and PCD may fall into one of the below situations (this is on a case by case basis)
- Children
- Elderly
- Ill/ have a health condition which will become worse if they fast
- Travelling
- pregnant, breastfeeding or menstruating/post-natal bleeding.
It is important to is to make a decision that is right for you. You don’t have to do this alone. You can speak to your local Imam and your healthcare professional for advice and support.

Child UnLimited is forming a 𝐑𝐮𝐫𝐚𝐥 𝐂𝐨𝐧𝐬𝐮𝐦𝐞𝐫 𝐀𝐝𝐯𝐢𝐬𝐨𝐫𝐲 𝐆𝐫𝐨𝐮𝐩 to embed real-life insights into the development and refinement of healthcare models, ensuring that the services designed are truly aligned with and capable of meeting the unique needs of children and their families in rural areas.🌳

A Consumer Advisory Group in the context of healthcare research, particularly focusing on accessing paediatric in communities, acts as a crucial link between the lived experiences of families navigating the healthcare system and the efforts to improve or innovate healthcare services.

This group is open to individuals who have first-hand experience with the challenges and nuances of accessing healthcare in rural settings.

👉 Read more about who is eligible to participate, and apply to be a member of the consumer group by scanning the QR code or clicking here: https://lnkd.in/gf8zR77C

A Summary of Day two of the APAA Summit is that there’s a concerted effort to address the evolving challenges within Australia’s healthcare landscape, with a particular focus on patient-centric policies.

The acknowledgment of demographic shifts, financial constraints, and the ongoing impact of COVID-19 underscores the complexity of the issues at hand.
Minister Butler’s recognition of these challenges and the commitment to finding solutions, alongside Senator Anne Ruston’s emphasis on early diagnosis and the involvement of patients in policy creation, reflects a proactive stance from the government.

The prioritization of obesity prevention, strengthening bulk billing for vulnerable populations, and discussions on dental health all point towards a comprehensive approach to public health.

The emphasis on collaboration, innovation, and patient-centered approaches underscores the importance of inclusivity and resilience in healthcare systems. By incorporating patient perspectives and prioritizing their needs, policymakers and stakeholders can ensure the development of a more robust and accessible healthcare system for all Australians.

Overall, the APAA Summit serves as a platform for meaningful dialogue and action towards improving healthcare outcomes in Australia. The contributions of senators, presenters, and stakeholders are crucial in driving positive change and making a difference in the lives of those in need of healthcare support.

We look forward to seeing ongoing changes to improve those with chronic and rare disease . The consumer’s voice is key to changes within our health systems.

Thank you to Peta Lange , Deidre Mackechnie , Nettie Burke and Ogilvy PR ANZ. for all your hard work over the two days to bring so many like minded people who want to make a difference .

Indeed, today is a truly special occasion as we celebrate Rare Disease Day on February 29th, the rarest of rare occurrences. This day provides a unique opportunity to raise awareness, show support, and advocate for individuals living with rare diseases, including Primary Ciliary Dyskinesia (PCD).

On this extraordinary day, let us come together to:

Raise Awareness: Spread awareness about rare diseases like PCD through social media, educational events, and community outreach. Share facts, personal stories, and resources to increase understanding and empathy.

Show Support: Show support for individuals and families affected by rare diseases by offering encouragement, empathy, and solidarity. Let them know they are not alone in their journey.

Advocate for Change: Advocate for policy changes, increased funding for research, and improved access to healthcare and support services for individuals living with rare diseases. Use your voice to make a difference in the lives of those affected.

Celebrate Resilience: Celebrate the resilience, strength, and courage of individuals living with rare diseases, as well as their caregivers and advocates. Recognize their remarkable achievements and contributions to their communities.

Promote Unity: Foster unity and collaboration among all stakeholders, including patients, caregivers, healthcare professionals, researchers, and policymakers, to address the challenges faced by those living with rare diseases.

By coming together on this rarest of days, we can make a meaningful difference in the lives of individuals living with rare diseases like PCD. Let us celebrate Rare Disease Day with compassion, empathy, and a commitment to creating a brighter future for all.

After three days in Canberra it was, an incredibly impactful and eventful days, filled with stimulating discussions and empowering experiences at the Australian Patient Advocacy Alliance. Today mark the Rarest of rare days in celebrating Rare Disease Day which was held by Rare Voices Australia with the launch of the National Recommendations for Rare Disease Health Care at Parliament House further underscores the importance of advocating for individuals living with rare diseases.

The emphasis on person-centered care that values diversity and lived experience is crucial in ensuring that the unique needs and perspectives of rare disease patients are recognized and addressed within the healthcare system.
The launch of the National Recommendations for Rare Disease Health Care represents a significant step forward in advocating for better healthcare outcomes for individuals with rare diseases in Australia. It’s heartening to see the Australian patient community coming together, being seen, heard, and valued in Canberra.
Thank you to all involved for sharing your continued advocacy efforts. Together, we can make a difference in the lives of those affected by rare diseases. . https://lnkd.in/dvXnhCSa
.

Day 1 - The APAA Summit yesterday featured an exceptional panel discussion with notable speakers including

Jo Watson, Department Chair of the Pharmaceutical Benefits Advisory Committee (PBAC),
Ann Single from the Patient Voice Initiative,
Patient representative Shelly Parker, and moderator Peta Lange from Ogilvy Healthcare

The panel focused on exploring genuine partnerships in the Health Technology Assessment (HTA) space.

One key takeaway from the discussions during the day was the importance of good policy and collaboration in driving meaningful outcomes in healthcare. The panel and other speakers, emphasized the significance of fostering strong partnerships between stakeholders, including patients, healthcare professionals, policymakers, and industry representatives, to ensure that HTA processes are patient-centered and effectively address the needs of all stakeholders involved.
Discussions throughout the day provided valuable insights into the role of collaboration and policy in shaping HTA processes and improving healthcare outcomes for patients.

In honour of Rare Disease Day which will be on 29 February this year (the rarest day of the year!), we thought it was a great opportunity to delve deeper to learn more about the significance of this day

Rare Disease Day occurs on the last day of February annually, and it is a globally coordinated movement on rare disease, working towards equity in social opportunity, healthcare, and access to diagnosis, treatment and therapies for people living with a rare disease.

According to the Australian Government and Rare Awareness Rare Education (RARE) portal, approximately 8% (2 million) Australians live with a rare disease (Heath, 2020). There are at least 7,000 known rare diseases, and new diseases are being discovered regularly. 80% of rare diseases are of genetic origin, and types of non-genetic rare diseases include rare infectious diseases, rare autoimmune diseases, and rare cancers.

Why is this day important?

Rare diseases may vary in prevalence across different regions of the world. In Australia, there is insufficient knowledge and data regarding rare diseases to accurately discern their status.

Individuals grappling with rare diseases encounter shared obstacles, such as challenges in securing a precise diagnosis, limited treatment options, and fragmented healthcare services.

Rare diseases, akin to numerous chronic conditions, often pose serious and progressive health concerns, characterised by intricate symptomatology. Reports indicate that fewer than 5% of rare diseases currently boast effective treatments.

Diagnostic delay is also common with 30% of Australian adults living with a rare disease impacted by a diagnostic delay of more than five years. This along with misdiagnosis which can have physical, psychological, emotional and financial costs for the person living with a rare disease and their family means that we must do more to improve outcomes for these members of society

Enhancing the quality of life and extending the lifespan of individuals affected by rare diseases hinges upon access to suitable treatment and comprehensive care.



More in comments

In honour of Rare Disease Day which will be on 29 February this year (the rarest day of the year!), we thought it was a great opportunity to delve deeper to learn more about the significance of this day.

See more in comments.

Great to see PCD in the spotlight for the Good Friday Appeal this year.

https://www.facebook.com/photo/?fbid=793312049507629&set=pb.100064865225355.-2207520000

Dominic's 10-year journey at The Royal Children's Hospital began when his breathing became laboured days after birth.

“We were flown down here from Bendigo when he was three days old in the middle of the night,” said Dom’s mum. “We arrived and a resus room was waiting for us. I was absolutely terrified. “They did an X-ray and found out that none of his organs were where they were supposed to be.”

For the Bendigo mum, those first few hours were devastating and confronting. It took several months before Dom was diagnosed with primary ciliary dyskinesia, which is similar to cystic fibrosis.

The rare genetic disease affects tiny, hairlike structures called cilia that line the airways and can cause chronic infections of the lungs, ears and sinuses. Like many kids with PCD, Dom also has dextrocardia, meaning his heart is on the right side of his chest. Luckily, his early diagnosis allowed doctors to give Dom the best possible start to life.

Read Dominic's story here: https://hubs.li/Q02ksdjV0

https://www.facebook.com/share/2gj1bGt27nCLn9VP/?mibextid=QwDbR1

Register today! ReCode Therapeutics Webinar on PCD Genetic Testing, Jan. 19th - https://mailchi.mp/pcdfoundation.org/register-for-a-pcd-webinar-6230035

Reflecting on a Remarkable Year and Celebrating Our Achievements

As the year draws to a close and the festive season is upon us, I wanted to take a moment to reflect on the incredible journey we’ve had together in 2023. This year has been nothing short of remarkable, filled with challenges, triumphs, and most importantly, the spirit of collaboration and giving.
We had many highlights this year –
Collaboration with the Lung Foundation for a Grant toward further studies for PCD - $30,000 over 3 years
October Fundraising Bike Riding campaign- $9881.86 was raised – thank you to all who participated.
Physiotherapy videos in collaboration with the RCH , these will be on our website in the new year.
Some of our supporters were successful in holding local events to raise awareness and funds - thanks goes out to the Hayes family in Mildura and Laura Lawrie and her husband Ben who held an event at their local yacht club . 
Scots School Albury students raised $477.85 after presenting an idea to the school community . 
We welcomed two new Board members – James Stuart and Shannon Epp
Farewelled three Board Members Julie Hayes , Bronwynne Bailey and Louise Murphy thank you for your contribution 
As we come together with loved ones to celebrate the holiday season, let us carry this spirit of unity and generosity into the new year. The accomplishments of 2023 have set a strong foundation for the future, and I am excited about the possibilities that lie ahead for our organisation and the positive impact we can continue to make together.

Wishing you and your loved ones a joyous holiday season filled with warmth, love, and moments of reflection. May the coming year be filled with even greater achievements, shared successes, and the continued spirit of giving.

Our Team is taking a break from 22 December to 8 January to celebrate and rest up for a big year in 2024 and if you are interested in joining us make a difference please feel free to contact us . We have many task to complete and you do not have to be a board member to make a difference.

With gratitude and festive cheer,

Catherine and the Board
PCD Australia

Reflecting on a Remarkable Year and Celebrating Our Achievements

As the year draws to a close and the festive season is upon us, I wanted to take a moment to reflect on the incredible journey we've had together in 2023. This year has been nothing short of remarkable, filled with challenges, triumphs, and most importantly, the spirit of collaboration and giving.
We had many highlights this year –
Collaboration with the Lung Foundation for a Grant toward further studies for PCD - $30,000 over 3 years
October Fundraising Bike Riding campaign- $9881.86 was raised – thank you to all who participated.
Physiotherapy videos in collaboration with the RCH , these will be on our website in the new year.
Some of our supporters were successful in holding local events to raise awareness and funds - thanks goes out to the Hayes family in Mildura and Laura Lawrie and her husband Ben who held an event at their local yacht club .
Scots School Albury students raised $477.85 after presenting an idea to the school community .
We welcomed two new Board members – James Stuart and Shannon Epp
Farewelled three Board Members Julie Hayes , Bronwynne Bailey and Louise Murphy thank you for your contribution
As we come together with loved ones to celebrate the holiday season, let us carry this spirit of unity and generosity into the new year. The accomplishments of 2023 have set a strong foundation for the future, and I am excited about the possibilities that lie ahead for our organisation and the positive impact we can continue to make together.

Wishing you and your loved ones a joyous holiday season filled with warmth, love, and moments of reflection. May the coming year be filled with even greater achievements, shared successes, and the continued spirit of giving.

Our Team is taking a break from 22 December to 8 January to celebrate and rest up for a big year in 2024 and if you are interested in joining us make a difference please feel free to contact us . We have many task to complete and you do not have to be a board member to make a difference.

With gratitude and festive cheer,

Catherine and the Board
PCD Australia

It's finally here! 🎃 friends! It's time to dress up, make spooky treats, and revel in the Halloween spirit! Share your favorite costumes and candy haul pics with us and enjoy the fun and fright of this holiday 🦇

Cilia (and Flagella) are microtubule-based organelles that project from the surface of cells and serve both motile and sensory functions.
Help raise awareness by sharing these facts with family and friends and join us in our campaign this month to Ride, Run or Walk 55 Km by clicking on the link https://pcda55km2023.raisely.com/

Dear all,

This year’s PCD patient conference will be held online on

Tuesday November 21st 14:00-16.00 CET Europe

The following times in Australia are

Queensland Time -Tuesday 11 pm to 3 am Wednesday

NSW Victoria - 00:00 to 4 am Eastern states - Midnight on 21 to 4.00 am Wednesday

South Australia - 11.30 pm Tuesday night 21 to 3.30 am Wednesday 22

Perth - 9.00 pm - 1.00 am - Tuesday 21

Darwin - 10.30 pm Tuesday 21 - 2.30 am Wednesday 22

It is organised jointly by patients with PCD and their families, researchers and clinicians. We aim to provide up to date information on
basics concepts about PCD, treatments and care in PCD as well as learning from others experiences of PCD. This conference will also
provide an opportunity to be updated on ongoing research, meet other
people with PCD and contact local patient organisations.

You can register for free at
https://www.eventbrite.co.uk/e/primary-ciliary-dyskinesia-patient-conference-2023-tickets-673987072477?aff=oddtdtcreator
[1]

We would like to ask you to advertise the conference widely among patients and families in your network and join us if you can on that day
to contribute with your expertise in the discussions. Attached you may find a flyer for advertising and the conference programme.

We are looking forward to meet online with many of you on November 21st!

Kind regards,

Myrona Goutaki, on behalf of BEAT-PCD and the conference organising
committee

PCD Australia wants to give a big shout-out to for deciding to raise funds for PCD Australia. He will be running 80km in May 2024 down at Margaret River - please support him if you can.

https://ow.ly/enPY50PWPKu

Happy National Dessert Day! Celebrate by baking your favorite sweet treat and sharing it with friends and family!
Who doesn't like a good dessert?

Happy Global Handwashing Day! 🎉 Let's all stay safe and remember the importance of handwashing! 🧼 Washing your hands with soap and water is one of the best ways to prevent the spread of germs and illnesses. Hand Hygiene in our community is essential to stop the spread of disease and infection.
🤗 Together, we can promote a safe and healthy environment for everyone.