2k2wranglerx
Member
- Joined
- Dec 8, 2014
- Messages
- 34
- Reaction score
- 7
I'm sure some of you know but both of my Girls have Cystic Fibrosis (and some people on this forum have ties to CF as well). Every year i do a bike ride and raise $ for the Cystic Fibrosis Foundation. In the past the members on this board have absolutely blown me away with their generosity. I know there's a lot of worthy causes out there. But i'm asking this community for it's continued support. You guys are always awesome and beyond generous. And i thank you for your past and continued support.
CF is a terminal and chronic illness that destroys the pancreas and the lungs. We have a few members on here that actually have CF and a few who's children have it. I've spoken to a couple of them and they're incredibly inspiring.
As for my kids. Amelia is 5 and Penelope is 1. Penelope spent her first 3 months in children's hospital after she was born. That was a rough time for us. They kept her alive on TPN and Lipids through a central line that ran up to her heart. She didn't have enough bowel to digest her food.
that's how we spent 3 months. never more than 4' from her IV pole and monitors. we had a chair next to her crib and for 3 months all she knew was her crib or being held in the chair.
(with her sister amelia who also has CF and their mom/my wife)
Since then Penelope has had a pretty huge recovery. she's a fat, happy, crazy kid with absolutely no fear of anything except people who wear rubber gloves and nurses.
It's tough having 2 kids that statistically i'm supposed to outlive. But they have each other to lean on.
Amelia's doing pretty well also. Fighting some things that we saw coming. Typical CF cough. Starting to see some progression which is really hard. But she's 100% compliant to her treatment and we've never, ever, ever missed a therapy with her (3-4 a day for 5 years, both girls take 27 or so pills a day, 2-4 nebulized medicines as well as up to 4 vest treatments a day!!!)
Both girls had their lungs scoped this year and they look as well as can be expected. and we keep them active to try and keep them as active as possible to help clear the junk out of their lungs:
Anyway, on to the good news. We are looking at Gene therapy being a reality in 5 years! they're already doing some trials and it's showing a lot of promise. People are inhaling corrector genes that make the cells work properly... that's AMAZING.
Kalydaco and Orkambi are both correctors that show great promise for extending the life of people with CF and there's new combinations on the way.
People like you guys. Who have no direct ties to CF are single handedly funding cures for these kids. You're adding tomorrows by donating! The cystic Fibrosis Foundation actually purchased a lab and what they're doing is developing these therapies and drugs in house, then handing them off to the big drug companies to complete. What that's doing is taking the risk out of the game for the drug companies and it's leading to HUGE innovations.
This will be the Polio of our generation. We will see a cure for this.
Anyway, my fat butt will be riding to continue to raise $ for the foundation. more than 90 cents of every dollar raised goes to research. Not fancy offices for execs, not outreach, not awareness. It goes to funding the science. The Cures. The therapies.
Anyway, if you find it in your heart to donate my page is:
Pittsburgh CF Cycle for Life 2016: Mr. Ryan Dunbar - Cystic Fibrosis Foundation
http://fightcf.cff.org/goto/angelsandpeeps
Thank you for considering my cause and helping give my girls more tomorrows!
CF is a terminal and chronic illness that destroys the pancreas and the lungs. We have a few members on here that actually have CF and a few who's children have it. I've spoken to a couple of them and they're incredibly inspiring.
As for my kids. Amelia is 5 and Penelope is 1. Penelope spent her first 3 months in children's hospital after she was born. That was a rough time for us. They kept her alive on TPN and Lipids through a central line that ran up to her heart. She didn't have enough bowel to digest her food.
that's how we spent 3 months. never more than 4' from her IV pole and monitors. we had a chair next to her crib and for 3 months all she knew was her crib or being held in the chair.
(with her sister amelia who also has CF and their mom/my wife)
Since then Penelope has had a pretty huge recovery. she's a fat, happy, crazy kid with absolutely no fear of anything except people who wear rubber gloves and nurses.
It's tough having 2 kids that statistically i'm supposed to outlive. But they have each other to lean on.
Amelia's doing pretty well also. Fighting some things that we saw coming. Typical CF cough. Starting to see some progression which is really hard. But she's 100% compliant to her treatment and we've never, ever, ever missed a therapy with her (3-4 a day for 5 years, both girls take 27 or so pills a day, 2-4 nebulized medicines as well as up to 4 vest treatments a day!!!)
Both girls had their lungs scoped this year and they look as well as can be expected. and we keep them active to try and keep them as active as possible to help clear the junk out of their lungs:
Anyway, on to the good news. We are looking at Gene therapy being a reality in 5 years! they're already doing some trials and it's showing a lot of promise. People are inhaling corrector genes that make the cells work properly... that's AMAZING.
Kalydaco and Orkambi are both correctors that show great promise for extending the life of people with CF and there's new combinations on the way.
People like you guys. Who have no direct ties to CF are single handedly funding cures for these kids. You're adding tomorrows by donating! The cystic Fibrosis Foundation actually purchased a lab and what they're doing is developing these therapies and drugs in house, then handing them off to the big drug companies to complete. What that's doing is taking the risk out of the game for the drug companies and it's leading to HUGE innovations.
This will be the Polio of our generation. We will see a cure for this.
Anyway, my fat butt will be riding to continue to raise $ for the foundation. more than 90 cents of every dollar raised goes to research. Not fancy offices for execs, not outreach, not awareness. It goes to funding the science. The Cures. The therapies.
Anyway, if you find it in your heart to donate my page is:
Pittsburgh CF Cycle for Life 2016: Mr. Ryan Dunbar - Cystic Fibrosis Foundation
http://fightcf.cff.org/goto/angelsandpeeps
Thank you for considering my cause and helping give my girls more tomorrows!
