Bill Van Nierop, 70, is about to embark on a mental and physical challenge kayaking about 1200 kilometres of one of the country’s longest rivers, the Murrumbidgee River. His journey kicks off on August 28, and he’s raising funds for a cause that’s incredibly important to him.
In 2015, Bill was diagnosed with the progressive and incurable lung disease, Idiopathic Pulmonary Fibrosis (IPF).
Since his diagnosis, Bill has been on a mission to spread awareness of lung disease and raise funds for research that improves outcomes for those impacted by lung disease and lung transplantation. Bill has raised $210,000 for The Lung Foundation since 2016, which went on to fund a 3-year PhD scholarship.
These funds were raised through peer-to-peer fundraising plus corporate support and were generated from three significant physical challenges, all while operating with just 50% lung function. These consisted of the City to Surf (2016), Long Walk for Lungs (2017) and the Long Kayak for Lungs 1 (2018).
Bill Partners with The Common Good in 2023
Bill received a double lung transplant in 2021 at The Prince Charles Hospital. This year, he has partnered with The Common Good and hopes to raise $50,000 for further research into IPF and lung transplants.
In addition to raising significant funds to progress research into the incurable condition of IPF, Bill also provides philanthropic support to further the awareness and community understanding of lung diseases.
Through advocacy, peer-to-peer patient support and speaking engagements, Bill is helping to change community attitudes towards this insidious disease group and remove the hurtful and harmful stigma often linked to those with a lung disease.
Most recently, Bill delivered a keynote address to a cohort of 100+ researchers to highlight the voice of the patient. He also addressed over 90+ community members through a Probus Club keynote address highlighting the prevalence of lung disease and advocating for further research into health areas that are niche and often overshadowed by more widespread and publicly recognised conditions.
About 1,250 people diagnosed with IPF each year
There are approximately 1,250 people diagnosed with IPF each year, a relatively small number compared to more well-known and publicly recognised lung diseases such as lung cancer.
Bill’s vision has been not to let these IPF patients slip through the cracks.
IPF will eventually lead to respiratory failure and death, with the median survival reported to range from two to five years. These likely outcomes are a harsh and scary reality for many to face.
Bill has described lung disease as a lonely place, with many assumptions and deep stigmas attached. From comments of ‘not looking sick enough’ to ‘you must have been a smoker’, awareness and education are key to progressing social outcomes, research outcomes, and ultimately better outcomes for people impacted.
Bill provides a safe, empathetic and understanding ear to patients who have been diagnosed with a lung disease. Through Bill’s own personal lived experience, he is able to provide emotional support along with practical advice and knowledge.
Bill displays leadership and drives an agenda for increased advocacy
With low awareness rates of IPF, therefore often leading to lower levels of support, Bill displays leadership and drives an agenda for increased advocacy, research and funding for IPF by highlighting the critical need for support.
From community to corporates, Bill boldly shares his views which come from his lived experience with this condition. It is through this leadership that he can involve others in his philanthropic activities through financial support, advocacy, and awareness.
The impact of Bill’s support for the Queensland community is profound and extends far beyond financial support alone. The support and hope that Bill provides for others within the community who are battling a debilitating and incurable lung disease cannot be understated.
To learn more about the Long Kayak for Lungs 2, visit the website. Alternatively, you can show your support to those impacted by lung disease by donating here or can follow Bill’s updates on social media here.