Meet my nephew Elliot.
How freaking cute is he?!! It’s just too much! He and his older brother are the bomb. I am a lucky woman to have them in my life.
While we were up at my parent’s annual Brew and Pie Fest this year, Kevin and I had a whole 2 hours to hang out with them almost all by ourselves without adults. It was way fun. At one point, Elliot wanted to explore the chicken yard to pick flowers for me. It was too much cuteness I tell ya!
Our flower picking gentleman of a nephew was born with a disorder called PCD. It’s actually way longer of a word, but let’s just refer to it by its abbreviation. PCD affects the lungs, ears, sinuses and fertility. In PCD, impaired ciliary activity (cilia are microscopic organelles that line the airways and other parts of the body to sweep out dust and germs) results in lifelong respiratory disease with chronic infections of the lungs, sinuses and ears. Over time, these debilitating infections results in permanent damage to these areas and, in the case of the lungs, possible respiratory failure.
The pluses of PCD are that activity and an active lifestyle are the best things for it, so it’s not an affliction that demands he stay indoors cooped up in a bed or something. The negatives are that it’s effects are progressive which means that’s its likely that he, and others with PCD will need a lung transplant at some point in their life.
Another bummer is that it is so rare. There is not a ton of funding and researchers out there to push the stages of diagnosis and treatment further along.
While PCD is not a household name, the condition itself is actually not as rare as it appears because so many people are simply not diagnosed. I know that this day in age that the word “awareness” is a bit oversaturated, but PCD is something that needs more awareness. The more people that are properly diagnosed, the more the researchers and doctor’s can do clinical trials and push the understanding of the disease and how to treat it forward.
My sister started a fundraising platform called Breathe For PCD. She makes really cool shirts and calendars that raise money for the PCD Foundation while also spreading awareness about the disorder. This is her second year making a calendar. She curates a collection of her favorite photos of mine and sells them for a finite period. The ordering deadline is October 31st this year.
Check out her Breathe For PCD website, and since you’re here, why not buy a calendar? Today’s blog post features pretty nature images that you could adorn your walls with for the coming year. I am so proud of my sister for her strength and determination to not get bogged down by the negative, but to keep calm, breathe deep, and do her part to make a difference. One tee shirt and calendar at a time.
GET YOUR 2018 CALENDAR HERE!!!
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