Fat Guy in Spandex... and he needs your help again - JKowners.com : Jeep Wrangler JK Forum
 9Likes
  • 3 Post By 2k2wranglerx
  • 1 Post By larry0071
  • 1 Post By 2k2wranglerx
  • 2 Post By 2k2wranglerx
  • 2 Post By 2k2wranglerx
 
LinkBack Thread Tools Display Modes
post #1 of 15 Old 08-26-2019, 02:11 PM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews
Fat Guy in Spandex... and he needs your help again

Hey guys,

You know i only post about 1 fundraiser a year. And you OG JKO guys remember my kiddo's. For you guys that are newer. Both of my daughters have cystic fibrosis. Which is a terminal disease that basically destroys the lungs, pancreas, and in Penelope's case her liver.

They're doing pretty well right now. Amelia's on a new drug (that was 100% privately funded by donations through the CFF... Donations from you guys!. Those of you that gave when i first started doing this 7 years ago, you literally helped pay for this med Amelia is on). PJ's doing pretty well. Liver issues but otherwise seems ok. She's so tough though it's sometimes hard to tell.

This year they both got to meet Colton Underwood (the bachelor) and he gave them Afflovests! which has been an absolute life changer for both of them.

Anyway, if you give to charities, I am asking you to consider giving to one that's literally keeping my kids alive. Even a few bucks gives you part ownership of these new treatments. And like i said, those of you that gave 7 years ago, literally helped fund a medication that Amelia is taking (and PJ will be eventually)!

Thanks guys:

Pittsburgh CF Cycle for Life 2019: Ryan Dunbar - Cystic Fibrosis Foundation

the girls at Bantam with their new Afflo Vests:



At Rocks for Roses. The young lady there in the 2nd pic is Katelyn. She also has CF and now runs what was the Amelia's Angels jeep ride. I gave it to her with PJ was born. The girls got to meet her from a distance (CFers can't be near each other. Ever seen 5 feet apart? that's about CF)





our cycle for life team last year was the number 1 fundraising team also! and we rode in a hurricane... so you guys got your $'s worth out of my suffering haha





Anyway, thanks for your continued support. And thank you for giving my girls more tomorrows.


31 jeeps in... still have issues
2k2wranglerx is offline  
Sponsored Links
Advertisement
 
post #2 of 15 Old 08-26-2019, 02:27 PM
Rock God
 
Treader's Avatar
 
Join Date: Jan 2012
Location: Sulphur Springs, TX
Posts: 1,522
Feedback: 0 reviews

Glad the kiddos are doing good. Those vest you have written about are awesome. Some much less to carry around. We are back to a newborn and I forget about the amount of STUFF you have to always take with you.

On a bike related note, you act like riding in the rain was terrible. I would have gladly taken rain this past weekend in Wichita Falls for the Hotter'N Hell Hundred. At least this year temps didn't get over 100*, but still low 90's sucks with the humidity!

2010 2 door manual sport
Treader is offline  
post #3 of 15 Old 08-26-2019, 02:37 PM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

Quote:
Originally Posted by Treader View Post
Glad the kiddos are doing good. Those vest you have written about are awesome. Some much less to carry around. We are back to a newborn and I forget about the amount of STUFF you have to always take with you.

On a bike related note, you act like riding in the rain was terrible. I would have gladly taken rain this past weekend in Wichita Falls for the Hotter'N Hell Hundred. At least this year temps didn't get over 100*, but still low 90's sucks with the humidity!
haha ya it could have been worse. But it was like 47 and absolutely pouring on us. Every single other event cancelled... except ours.

But I did 30 miles in the rain and couldn't feel my legs at the end haha

31 jeeps in... still have issues
2k2wranglerx is offline  
post #4 of 15 Old 08-26-2019, 03:34 PM
Granite Guru
 
larry0071's Avatar
 
Join Date: Feb 2016
Location: Pittsburgh, Pa
Age: 48
Posts: 378
Feedback: 0 reviews

Why don't you post a way for those of us who didn't make the roses to pay directly to helping these girls get the medical help they need? I've been to the rocks for roses these last couple years, but I didn't do any wheeling at all this summer....

But I know that I would kick a wooden nickel at the girls.

Sent from my SM-N960U using Tapatalk
Fklein6768 likes this.


To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

2014 JK Willys, 37x13.5-18 STT Pro, 3.5" RK with 1.25 body lift, 28" Fox 2.0 IFP, Ruff Stuff Tie Rod, Synergy Trackbar/Bracket/Sector Bracket, WTO Ram Assist, EVO RockStar Rear Brackets, ProRock 44U, RCV/Ten Factory shafts/E-Locker, Synergy Balls, Factory Rear LSD, 12K LB X2O Gen 2 Comp, SB SRC Front/Body Armor Rear bumpers, RR and RE armor, Adams Shafts, 4.88 Yukon Gears. My toy.


2016 Cherokee Trailhawk V6, Mango Tango.


2016 Cherokee Trailhawk V6
larry0071 is online now  
post #5 of 15 Old 08-26-2019, 06:59 PM
JKO Addict!
 
Fklein6768's Avatar
 
Join Date: Jul 2009
Location: Central New Jersey
Age: 51
Posts: 4,862
Feedback: 6 reviews

Quote:
Originally Posted by larry0071 View Post
Why don't you post a way for those of us who didn't make the roses to pay directly to helping these girls get the medical help they need? I've been to the rocks for roses these last couple years, but I didn't do any wheeling at all this summer....

But I know that I would kick a wooden nickel at the girls.

Sent from my SM-N960U using Tapatalk
I am on the phone but if u click on the link in the first post I think you can throw some support their way

So glad to hear their both kicking some ass and enjoying the additional freedom those vests have provided.

Kudos to mom and dad for being the biggest reason they are doing so well

Sent from my SAMSUNG-SM-G891A using Tapatalk

www.4x4s-pod.com
Fklein6768 is online now  
post #6 of 15 Old 08-26-2019, 09:30 PM
you can go piss up a rope
 
snout's Avatar
 
Join Date: Apr 2015
Posts: 1,093
Feedback: 1 reviews

I look forward to contributing to this each year.
I also submitted a match with my employer, so I hope that helps too.

Quote:
Originally Posted by j3ff3ry_j33p View Post
yíaller quenchin' with beer
snout is offline  
post #7 of 15 Old 08-27-2019, 06:14 AM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

Quote:
Originally Posted by larry0071 View Post
Why don't you post a way for those of us who didn't make the roses to pay directly to helping these girls get the medical help they need? I've been to the rocks for roses these last couple years, but I didn't do any wheeling at all this summer....

But I know that I would kick a wooden nickel at the girls.

Sent from my SM-N960U using Tapatalk
Rocks for Roses and the bike ride both funnel the $ to the same place. Which is the western PA chapter of the CFF which then sends it to national where it's used for research (90 cents of every dollar is straight to research).

I can send you a link for Rocks for roses but this link: Pittsburgh CF Cycle for Life 2019: Ryan Dunbar - Cystic Fibrosis Foundation goes to the same place. it just shows as through the ride not the jeep event.

As far as the direct medical care... so far so good. Kim and I have 2 Insurance policies plus AFLAC lol. That's on me as a dad to make sure they get it ya know. I'm not too proud to ask for help, but right now the need is definitely in getting these drugs to market.

Quote:
Originally Posted by Fklein6768 View Post
I am on the phone but if u click on the link in the first post I think you can throw some support their way

So glad to hear their both kicking some ass and enjoying the additional freedom those vests have provided.

Kudos to mom and dad for being the biggest reason they are doing so well

Sent from my SAMSUNG-SM-G891A using Tapatalk
Thanks man. it's 100% a community effort. I'm friends with some people that adopted a little girl from foster care who has CF. She needed a lung transplant at 5 because she wasn't getting the care she needed. Absolutely heart breaking and just shows what happens when there isn't that support structure.



Quote:
Originally Posted by snout View Post
I look forward to contributing to this each year.
I also submitted a match with my employer, so I hope that helps too.
It's a huge help man! Like i said earlier, you guys literally funded the drug Amelia is currently on!

31 jeeps in... still have issues
2k2wranglerx is offline  
post #8 of 15 Old 08-28-2019, 09:46 AM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

Holy crap it went to 1900 in 2 days!

31 jeeps in... still have issues
2k2wranglerx is offline  
post #9 of 15 Old 09-03-2019, 09:05 PM
V8 dreams
 
jvandy50's Avatar
 
Join Date: Sep 2010
Location: jonesboro, ar
Posts: 3,553
Feedback: 0 reviews

Always enjoy the updates and the enormous amount of stuff you guys do for these kiddos.

Iíll be sure to use that link and donít forget, AEV RULES!!!


To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
2010 Silver JKU
jvandy50 is offline  
post #10 of 15 Old 09-04-2019, 07:31 AM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

Quote:
Originally Posted by jvandy50 View Post
Always enjoy the updates and the enormous amount of stuff you guys do for these kiddos.

Iíll be sure to use that link and donít forget, AEV RULES!!!
LOL! it's all metalcloak and rubber bushings now hahahaha.

Thank you everyone that donated! only $534 bucks away from $10,000!!!!

31 jeeps in... still have issues
2k2wranglerx is offline  
post #11 of 15 Old 09-05-2019, 07:25 PM
Newbie
 
Join Date: Aug 2019
Posts: 2
Feedback: 0 reviews

Haha so family so cute and peaceful
k88viet is offline  
post #12 of 15 Old 09-09-2019, 10:11 AM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

Thanks guys! over $22,000 rasied by our team!!!! almost $70,000 so far overall!!!!



jvandy50 likes this.

31 jeeps in... still have issues
2k2wranglerx is offline  
post #13 of 15 Old 09-09-2019, 11:30 AM
Rock God
 
Treader's Avatar
 
Join Date: Jan 2012
Location: Sulphur Springs, TX
Posts: 1,522
Feedback: 0 reviews

Nice recovery drink! Congratulations on the fundraising.

2010 2 door manual sport
Treader is offline  
post #14 of 15 Old 09-13-2019, 08:16 AM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

Quote:
Originally Posted by Treader View Post
Nice recovery drink! Congratulations on the fundraising.
started the recovery before i crossed the finish line hahaha



and the diet started the next day... sigh
Treader and bongdaso123 like this.

31 jeeps in... still have issues
2k2wranglerx is offline  
post #15 of 15 Old 10-21-2019, 02:05 PM Thread Starter
JKO Addict!
 
2k2wranglerx's Avatar
 
Join Date: May 2010
Location: Pittsburgh, pa
Age: 39
Posts: 10,271
Feedback: 4 reviews

HELL YES!

https://www.fda.gov/news-events/pres...8aPhqDXxVI1dBY

It's hard as hell to get work done when i'm sitting here tearing up!!!! this is a big deal!!!! and everyone that's donated over the years. YOU have paid for this! YOU have funded this breakthrough. I'm so excited right now!

The people i know from the study have said it was life changing. one girl had her lung function IMPROVE by 17% and it stayed there!!!!

Guys... this is a big deal... and i'm more grateful than words can ever express. Thank you. Thank you. Thank you.
Fklein6768 and jvandy50 like this.

31 jeeps in... still have issues
2k2wranglerx is offline  
Sponsored Links
Advertisement
 
Reply

Quick Reply
Message:
Options

Register Now



In order to be able to post messages on the JKowners.com : Jeep Wrangler JK Forum forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.

User Name:
Password
Please enter a password for your user account. Note that passwords are case-sensitive.

Password:


Confirm Password:
Email Address
Please enter a valid email address for yourself.

Email Address:
OR

Log-in










Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page
Display Modes
Linear Mode Linear Mode



Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On

 
For the best viewing experience please update your browser to Google Chrome