To mark Pulmonary Fibrosis Awareness Month this September, we have a special guest blog from the Canadian Pulmonary Fibrosis Foundation (CPFF), to update on some awareness-raising activities and campaigns!
The month of September has been proclaimed as Pulmonary Fibrosis Awareness Month. All across Canada, people will band together to raise funds and awareness by hosting
various events, transforming landmarks with red & blue lighting and blowing up social media with photos of individuals and celebrities blowing bubbles in support of those who cannot. #CPFFBubbles
No one is more aware of the devastating affects of this deadly disease than 12 year old Abbie Clarke.
Having lost several family members, including her Grandpa, Aunt and Cousin, and with other family members currently living in various stages of the disease, Abbie learned all she could about Pulmonary Fibrosis and was inspired to organize a run/walk. Her goal was to raise awareness and funds to hopefully help find a cure.
Four years later Abbie continues her compassionate quest as the Clarke family hosts the Annual Clarke Walk for Pulmonary Fibrosis on September 15.
Pulmonary Fibrosis is a debilitating, progressive disease that greatly impairs quality of life and drastically reduces life expectancy.
“With research increasing our knowledge continually, there is hope for the future”, says Sharon Lee, CPFF Executive Director, “and public awareness is critical as we advocate for more accessible treatment and support of those living with the disease”.
You can watch Abbie’s video below:
The Canadian Pulmonary Fibrosis Foundation (CPFF) is a registered not‐for‐profit charitable organization established to provide support, hope and resources for all people affected by Pulmonary Fibrosis (PF), and is the voice for patients living with PF. For further details about Pulmonary Fibrosis, and the event, please visit www.ccpff.ca.
We will be supporting PF Awareness Month on our RepeatDx Facebook and Twitter accounts, follow us to make sure you don’t miss anything!
Highlighting the Importance of Telomere Biology Disorder Month November marks Telomere Biology Disorder (TBD) Awareness…
Exploring the Power of Rare - Welcome to the World of Rare Diseases! Although we…
Could preventive medicine be as simple as a blood test? Some diseases can be overlooked…
Telomeres?? Telomere length?? What in the world! These are the typical reactions among the ones…
The second edition Telomere Biology Disorders: Diagnosis and Management Guidelines have been officially published. This…
To help raise awareness of rare disease dyskeratosis congenita, and other telomere biology disorders caused…