Awareness
Unless you spent this summer in outer space or coal mining, I guarantee that at some point you heard of--if not participated in--the ALS Ice Bucket Challenge. How many of us had no idea what ALS actually was until the Ice Bucket Challenge generated an increase in awareness? I for one didn't. While there are conflicting opinions about the Ice Bucket Challenge, one thing that's undeniable is how successful it was in raising awareness, their original goal. The $115 million (and still growing) dollars donated as a result of the Challenge was the icing on the cake.
Coincidentally, the number of Americans living with ALS equals the amount of adults and children living with Cystic Fibrosis (CF) at about 30,000. And like ALS, CF is the type of disease that most people only learn of once they know someone with it or have it themselves, and I bet we all have friends who continue to know nothing about it. I am 34 years old and still sometimes feel like I have 3 heads when I tell someone that I have CF because they are so clueless; or even worse, I feel like a leper when I get the look Are you contagious? Knowledge is power and that's why I'm asking for your help in spreading CF awareness. I'm not asking you to donate to the CF Foundation (but be my guest if you feel so inclined.) I'm not asking you to dump anything on your head. And I'm not asking you to start knocking on neighborhood doors passing out CF pamphlets. I just want a little help keeping the dialogue open.
One way to help is by joining me in the OutRun CF Virtual Run. This is an annual fundraiser orchestrated by two ambitious CF-fers. Their main mission is to get fellow CF-fers to be more active while simultaneously increasing awareness throughout their communities. How it works couldn't be easier: just click on the link above to sign up, donate $32.95 to get a cool running shirt, and on Thanksgiving wear the shirt while doing some form of physical activity--ANY activity--and post a picture of it on social media. It's that simple and a win-win; people will see you in your OutRun CF shirt and start to ask questions or, even better, want to join in, and you'll get to eat extra turkey. Aside from covering the cost of the shirts and shipping, the money goes to 2 CF organizations that work tirelessly to bring about even more awareness and aid in research. You can do it alone or with a group of friends, but if you're interested I recommend you sign up by the end of October because the shirts do take a while to ship (and FYI last year's shirts ran a little on the small side.)
Another way to help spread awareness is by sharing the OneRepublic video "I Lived" on social media (see the video below or Apple users, click HERE) using the hashtag #ILived. This is by far the CF community's largest mainstream opportunity to raise awareness and I am so grateful to OneRepublic for creating such a beautiful message. It's a 5.5-minute music video that delicately balances informing people what CF is and what it means to live despite having it. It's a great way to introduce CF without getting too deep or technical, paired with beautiful lyrics that encompass what most of the CF community strives for: to live a life of quality over quantity and not succumbing to the limitations CF tries to impose. The video is spot-on when it shows that daily breathing treatments, wearing a percussion vest, and hospitalizations are a part of our everyday lives, but not dictating them.
The ALS Foundation has continued to raise a record amount of donations months after the social media hype of the Ice Bucket Challenge died down and far more people know what ALS is now than 4 months ago. I believe that awareness is half the battle. Yes, donations help too, but no one donates blindly to a cause they're unaware of. So as we head into October and become once again blinded by pink everywhere we look, let's try to shine a small flashlight on a much needed battle to find new life-sustaining medications and an average lifespan that's come a long way, but needs to be so much higher.
Thank you from the bottom of my grateful heart for taking the time to read this.
Love.
Coincidentally, the number of Americans living with ALS equals the amount of adults and children living with Cystic Fibrosis (CF) at about 30,000. And like ALS, CF is the type of disease that most people only learn of once they know someone with it or have it themselves, and I bet we all have friends who continue to know nothing about it. I am 34 years old and still sometimes feel like I have 3 heads when I tell someone that I have CF because they are so clueless; or even worse, I feel like a leper when I get the look Are you contagious? Knowledge is power and that's why I'm asking for your help in spreading CF awareness. I'm not asking you to donate to the CF Foundation (but be my guest if you feel so inclined.) I'm not asking you to dump anything on your head. And I'm not asking you to start knocking on neighborhood doors passing out CF pamphlets. I just want a little help keeping the dialogue open.
One way to help is by joining me in the OutRun CF Virtual Run. This is an annual fundraiser orchestrated by two ambitious CF-fers. Their main mission is to get fellow CF-fers to be more active while simultaneously increasing awareness throughout their communities. How it works couldn't be easier: just click on the link above to sign up, donate $32.95 to get a cool running shirt, and on Thanksgiving wear the shirt while doing some form of physical activity--ANY activity--and post a picture of it on social media. It's that simple and a win-win; people will see you in your OutRun CF shirt and start to ask questions or, even better, want to join in, and you'll get to eat extra turkey. Aside from covering the cost of the shirts and shipping, the money goes to 2 CF organizations that work tirelessly to bring about even more awareness and aid in research. You can do it alone or with a group of friends, but if you're interested I recommend you sign up by the end of October because the shirts do take a while to ship (and FYI last year's shirts ran a little on the small side.)
Another way to help spread awareness is by sharing the OneRepublic video "I Lived" on social media (see the video below or Apple users, click HERE) using the hashtag #ILived. This is by far the CF community's largest mainstream opportunity to raise awareness and I am so grateful to OneRepublic for creating such a beautiful message. It's a 5.5-minute music video that delicately balances informing people what CF is and what it means to live despite having it. It's a great way to introduce CF without getting too deep or technical, paired with beautiful lyrics that encompass what most of the CF community strives for: to live a life of quality over quantity and not succumbing to the limitations CF tries to impose. The video is spot-on when it shows that daily breathing treatments, wearing a percussion vest, and hospitalizations are a part of our everyday lives, but not dictating them.
The ALS Foundation has continued to raise a record amount of donations months after the social media hype of the Ice Bucket Challenge died down and far more people know what ALS is now than 4 months ago. I believe that awareness is half the battle. Yes, donations help too, but no one donates blindly to a cause they're unaware of. So as we head into October and become once again blinded by pink everywhere we look, let's try to shine a small flashlight on a much needed battle to find new life-sustaining medications and an average lifespan that's come a long way, but needs to be so much higher.
Thank you from the bottom of my grateful heart for taking the time to read this.
Love.
Comments
I used my daughters google account to post on this. I am Melinda (from the farm) I wanted to tell you that my daughters dance solo this year is "I lived". She looked at me and said "Dad wants me to do this because he wanted me to show the world how he lived"