Two years ago I lost my father to Pulmonary Fibrosis. He was king of the pun, kind, and curious. He was a retired principal who built a second career as an antiques dealer and as Grandpa extraordinare. After his diagnosis I thought I'd be able to help my parents navigate services and the health system. After all, I had many years under my belt supporting caregivers professionally, many years advocating for neurodiverse children, children with rare diseases, and those with medical complexity. Armed with a deep understanding of our national health system (read: national health insurance plan)'s strengths and limitations, I was not surprised when we had to ask for a compassionate review to afford his medication. I was not surprised at the difficulty in getting homecare. I was not surprised at the distance he had to travel for specialist appointments. But nothing prepares you for when that becomes personal. I am deeply proud of all the professionals from pharmacists, family doctor(luckily he had one!), to all the specialists. I am proud of my dad for keeping a smile and twinkle in his eye to the end. But I call upon policy makers to build a health system that is ready to meet the needs of those with rare disorders. Building a health system ready for anything is not easy and it is not cheap - but our health system is capable of greatness, and our citizens are worth the cost. I've never known so many incredible clinicians and researchers ready to meet the moment. We just need governments ready to make the long term investment in funding and designing a health system to meet the needs of all Canadians. #healthcare #leadership #rarediseases
Today marks the start of the global Pulmonary Fibrosis awareness campaign, dedicated to supporting individuals living with pulmonary fibrosis (PF), a rare and challenging condition. The Canadian Pulmonary Fibrosis Foundation (CPFF) invites you to join us in spreading the word every day. Let’s come together to "Know the Signs of PF" and "Shine a Light" on this important cause. Together, we can make a real difference and bring hope and support to those impacted by PF. #HopeBreathesHere Boehringer Ingelheim Trevi Therapeutics, Inc. Pliant Therapeutics Roche AbbVie Chiesi Group JAMP Pharma Group
Your dad was an amazing man and I know he would be so incredibly proud of you. You have and will continue to make positive change wherever you go. ♥️
Your father sounds like a lovely man, Corey. He raised a wonderful son who is tirelessly working to make a difference. Proud to know you.
Our stories are so very similar, big hugs
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5mo#PulmonaryFibrosismonth