May is Cystic Fibrosis Awareness Month

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How many people can we fit in this playground tunnel? #RockTheRed

May is Cystic Fibrosis Awareness Month

As you may or may not know, May is Cystic Fibrosis month. To do our part, we participated in a walk in Harrisonburg, VA last weekend (not technically May). They raised over $30,000 as a walk but it was a bit scary for Mom and Dad as it was difficult to determine who had CF and who did not. Those of us with CF are asked to wear purple and gold “fighter” shirts such as what I’m wearing below, but since Harrisonburg is the home of JMU and their school colors are the same…well, it was a bit scary. Those of us with CF are not supposed to come within six feet of one another as we run the risk of cross-contaminating. CF is a very isolating and lonely disease for this very reason.

We are walking in another Great Strides campaign in Alexandria, VA this coming weekend (May 6, 2017). Details for the walk can be found here. There will be free food and drinks provided by local businesses. So far, we’ve raised over $11,000 for the walk this year and are leading all teams participating. Thank you!!!

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Lawnmowers! Lawnmowers! Lawnmowers!

Dad is also attempting to utilize some of the other mechanisms provided via the Cystic Fibrosis Foundation (CFF) to establish my legacy. Dad set up the following fundraising site that allows for anyone to donate any amount of money at anytime in my honor (anonymously or not). The site is everlasting and 100% of all money donated goes to the CFF in hopes of one day finding a cure. In just 26 months of being alive, my friends and family have helped raise over $20,000. The idea here is that we’ll always have a sense of how much we/you/everyone has contributed over the years to helping us find a cure in my honor.

We also launched a T-shirt campaign using Booster (a subsidiary of CustomInk). It was incredibly successful and we raised over $1,800 for the Cystic Fibrosis Foundation in their fight for a cure. In addition to the funds that were raised, a lot more folks get to spread awareness to this disease by wearing this cool T-shirt. A big thanks to Eric Hooper for offering up his design services.

So if you missed out on a chance to order one, hit my dad up…he’ll probably end up ordering a few additional shirts for folks that didn’t find out about the campaign until after it ended.

And if walks or t-shirts, aren’t your thing…feel free to pitch an idea to my Mom or Dad or try to get then to sign up for the CF Hike, CF Bike, or a Fundraising Happy Hour – those are always fun!

Speaking of Awareness – Did You Know?

Cystic fibrosis (CF) is the most common inherited disease affecting the developed world, with one in every 2,500 children affected. It is a multi-organ disease, affecting the lungs, gut, liver, pancreas and reproductive tissues. At present about half of those with CF will die by their late 30s from lung disease.

Why We Fundraise & Why We Can Never Give Up

We fundraise in hopes that one day there will be a cure for cystic fibrosis. Lately, there had been a lot of hope behind PTC’s Translarna (ataluren), but recent news certainly let many of us in the CF community down. While reading that a company is stepping away from searching for a cure for CF and that the drug was scrapped due to less than stellar success, it only means one thing – we cannot give up. Take a look at what Jimmy V was able to do for cancer. In just 24 years, The V Foundation alone has raised over $150M for cancer research and thousands of other non-profits have done there part as well. While I do not have the platform yet of Jimmy V, I do have an amazing group of family and friends the have been there for me and my Mom and Dad since Day 1 and I want to thank everyone who has ever donated on my behalf. I cannot thank you enough.

My Cousins Continue to do their Part

Riley, Paige, and Hayden all continue to do a great job with fundraising. Earlier this week they raised $78 on a lemonade and snack stand at their school.

And Dad…

Took his spreading awareness to a whole new level

On a Lighter Note – Funny or Not

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Dad acting like Sidney Crosby and dropping to the ground

 

Mom really thought it was funny when I kicked Dad in the nether region. Dad, on the other hand, did not find this funny at all. He probably laid there for a solid three minutes before catching his breath while I ran around him gloating. While that may or may not be funny to you…we can all agree on one thing that is not funny – cystic fibrosis.

There is nothing funny about cystic fibrosis. When you have CF and you get a cold, you have to spend so much extra time doing therapy that you miss out on the fun things in life like going to the park and stuff. When I’m sick, we do double therapies which equate to about two hours a day (not counting the time it takes to sterilize parts, etc.).

Easter

Easter was cool. I got lots of candy and a scooter which is fun to ride. I mostly danced around the house all morning and played outside with Dad’s drills in the afternoon.

I also hung out with Paige on the neighbor’s swing.

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DC Sports Minute

@Nats – Harper, Zimmerman, Turner, and Murphy are going gangbusters. It such a bummer to lose Adam Eaton for the season after the start he was off to and he can’t really be replaced, but the team seems ready to step up based on Rendon’s 6-6 performance on Sunday. Let’s hope for a deep playoff run. Speaking of…Nationals are officially undefeated in games I’ve attended.

@Caps – Toronto certainly gave us a scare and it isn’t looking good down three games to one. Hopefully the Caps pull out the series and move on to the Eastern Conference Finals. Not counting on it, unless more guys start skating with the passion that Justin Williams does each and every night.

@Wiz – ehh…the Celtics handled them in Game 1 and 2 and even if the Wiz were to slip past the C’s, they would be no match for the Cavs.

Did you Notice?

You didn’t did you? Well I got my first major haircut (that wasn’t a trim with household scissors).

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Hopefully I’ll see those of you at the walk or around a ballpark this summer.

May is Cystic Fibrosis Awareness Month

Mama Can’t Handle the Truth

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Mama Can’t Handle the Truth

While Mom and Dad can’t complain (they don’t have CF), they do get a short end of the stick from time-to-time as they have to help with my therapies regardless if they feel like it or not and are probably more likely to get sick as they’re constantly around me. We all know that I’m more prone to getting sick so it only makes sense that their exposure is increased. While we don’t know for sure if Mom caught whatever it was that I had, Mom caught something viral and was wiped out. That meant Dad had to step up and handle all the therapies for those couple of days. So while Mom did her best to keep her distance, it wasn’t easy on her and gave way for me to start saying “Da-da” more than ever before. That led to text exchanges such as this…

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It also led to me and Dad becoming tighter than ever before. I’m sure many of you reading are probably thinking…”how could they be any tighter,” but there’s always room for improvement with anything in life. Dad and I took to Mega Blok’s – building some pretty impressive towers. Dad would even build towers for me overnight to wake up to and see in my playroom! We watched movies and even went on some lengthy bike rides.

Instagram – Str8 Flexin’

Something super weird happened recently during this stretch as well. Mom got her first taste of social media and launched her first ever account – Instagram. Now Mama is on the gram all day every day. Dad never thought something could replace her love affair with Daily Mail, but Instagram might just be the one. Mom is always angling for more followers, so I’ll give her a shameless plug on my blog @bridgetpeden.

DC Sports

Overheard Dad telling some friends that he’s not sure he wants me to grow up as a fan of DC sports after the constant letdowns he’s suffered. I keep telling Dad that at some point that has to change and maybe I’ll be coming up at the right time – like those lucky fans of Boston sports when Patriots, Red Sox, Bruins, and Celtics were all hanging banners. The NLDS defeat to the LA Dodgers was just the latest blow.

First Job Offer

Received my first job offer last week. That heavy interest in construction and hanging around construction projects led to a PM on one of the sites to come up to me and Pop and offer me a job.

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Cox Farms & Claude Moore Colonial Farms

Mom and Dad felt obligated to do the pumpkin patch thing so tried Cox Farms in Centerville, VA which everyone raves about. The place has some spectacular reviews, but it scared the living heck out of Mom and Dad because they went on Columbus Day and the place was packed. They didn’t even really have a patch so much as a pen in which they herd all the patrons through and you can grab pumpkins on your way out of the amusement park. They even charge $17/person. After shelling out $34 and leaving after about 20 mins, Aunt Rachel suggested…

Claude Moore Farms which had an $8 admission and charged $1 for a six ounce cup of water and $2 for some terrible sausage sandwich. It was cool to see many of the animals (cows, chickens, ducks, etc.) but there was a lot of wood being burned throughout the exhibits like in the old days so Mom and Dad were a bit hesitant to let me roam around too freely for fear of me breathing in too much smoke so Dad had an even better idea for some outdoor fun…

Country Roads, Take Me Home…

We headed south this past weekend to Dad’s hometown in Surry. Naturally, we did obligatory Pumpkin Patch photos but I never make it easy on Dad as a subject because I prefer to run around and throw pumpkins rather than sit there like a doll. That said, here are a few of the better photos Dad was able to snag of me while at the patch and at the family farm. College Run Farms, located in Surry is free and had thousands of pumpkins to choose from. They even had pumpkin ice cream.

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Born to Run

While the above represents how I behaved as a photographic subject for 90% of the shots, Dad was able to snag a few of me sitting.

Then there wast that time I found a yellow pumpkin. Did you know there were yellow pumpkins?

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Halloween

Mom dressed me up as a circus strong man. I might of worn this costume for all of four minutes…same length of time in which I can hold my iron cross on the rings.

Words and Favorite Things

I’m probably leaving out a ton of things I say or have said to date.

  • Truck­ – by far the most utilized word in my vocabulary that isn’t “dada” or “mama”. I love trucks – all trucks. I have lots of books with trucks and lots of toy trucks. One of my favorite things to do is watch the big construction trucks fly up and down John Marshall as they continue to fix the water pipes.
  • Cheese – this is an easy one and I say it when someone holds up string cheese and sometimes repeat it when smiling for the camera. My favorite string cheese is Horizon, which irks Dad since it’s double the cost for half as much product as its competitors.
  • Teeth – my dental hygiene game is on point. I love brushing my teeth every morning and night. I even try my hand at floss.
  • Up – when wanting to be picked up, placed in high chair, etc.
  • Sit – when i want you to sit down next to me.
  • Book – not a clear “book” but pretty close and everyone knows what I mean when saying it.
  • Ball – referencing the 100 + balls that I leave scattered throughout the house
  • Hi and Bye – classic salutations
  • Baba – when I want a bottle (of milk nixed with Pediasure)
  • Wawa – when I want water
  • Work – when I wake up and look for Dad but he’s not there in bed Monday – Friday

As of this week, I’ve even begun counting 1, 2, 3.

November 

Not sure what the month of November holds, but I’m sure it will be more fun.

Aiming to stay ahead of Mom and her Instagram posts. She steals me and Dad’s photos and pawns them off as her own.  wonder where she gets that from…TMZ perhaps?

Mama Can’t Handle the Truth