2k2wranglerx
Rock Stacker
you know... like when Chris Farley puts on David spade's jacket in Tommy boy... But i'm doing it in bike shorts... to raise $ for the Cystic Fibrosis foundation.
some of you guys know from earlier posts that Both of my daughters have Cystic Fibrosis.
For those that don't know. Cystic Fibrosis is a terminal illness that's mostly known for destroying the lungs. Amelia and Penelope (my 2 daughters) both won the genetic lottery and both have CF. They're both pancreatic insufficient. They both have lung involvement. And Penelope will probably need a liver at some point because it looks like she's developing CF related liver disease. There's also a 1 in 3 chance they'll develop CF related diabetes.
They're tough cookies. They do 2-4 vest treatments a day (see pic) 3-5 nebulized meds, somewhere around 30-40 pills a day. And various other interventions. Amelia is on a study drug and goes in once a month for blood draws and full work ups. There she does pulmonary function tests, blood tests, urine analysis, eye exam (to make sure she's not developing cataracts), and a breath washout. They get a lot of pokes and prods.
We never miss therapy. EVER. This is at the airport waiting to go to Hawaii for Amelia's make a wish trip.
Anyway, while the prognosis is grim. The treatments are developing at a rapid pace. 7 years ago when we found out Amelia had this there were no drugs to help. none. zero. nada. Now Orkambi and symdeko are big steps towards a cure. They're not end all cures but they're a way to slow the progression while we fight to find the key to the cure. And that's where you guys come in.
the Cystic Fibrosis Foundation move 90 cents of every dollar to research. so 90% of the $ you donate go directly to finding cures for my girls. Or as we call it. Adding tomorrows. The current life expectancy is up to 35. But that still means 25% of these kids are dying before they graduate from high school! That number is going to keep going up as we keep funding these developments.
There's a lot of good charitible causes out there. The CFF is a great one. And i hope you'll consider donating to this fundraiser. I'm riding 60 miles to raise $. Last year we were the 13th highest ranked team in the country. And the highest ranked team on our ride. I'd love to keep that streak going.
here is the link to my cycle for life page.
Pittsburgh CF Cycle for Life 2018: Ryan Dunbar - Cystic Fibrosis Foundation
and some gratuitious pics of the girls lol. Here's amelia in hawaii getting her wish of swimming with a dolphin.
The girls on amelia's make a wish trip with a turtle
My wife took them for pedicures after a long clinic day at the hospital
and then the not fun stuff... This is what you don't see on facebook. The childhood these girls face with amazing courage.
Anyway. Thank you for considering my fundraiser and helping to give my girls more tomorrows!
some of you guys know from earlier posts that Both of my daughters have Cystic Fibrosis.
For those that don't know. Cystic Fibrosis is a terminal illness that's mostly known for destroying the lungs. Amelia and Penelope (my 2 daughters) both won the genetic lottery and both have CF. They're both pancreatic insufficient. They both have lung involvement. And Penelope will probably need a liver at some point because it looks like she's developing CF related liver disease. There's also a 1 in 3 chance they'll develop CF related diabetes.
They're tough cookies. They do 2-4 vest treatments a day (see pic) 3-5 nebulized meds, somewhere around 30-40 pills a day. And various other interventions. Amelia is on a study drug and goes in once a month for blood draws and full work ups. There she does pulmonary function tests, blood tests, urine analysis, eye exam (to make sure she's not developing cataracts), and a breath washout. They get a lot of pokes and prods.
We never miss therapy. EVER. This is at the airport waiting to go to Hawaii for Amelia's make a wish trip.
Anyway, while the prognosis is grim. The treatments are developing at a rapid pace. 7 years ago when we found out Amelia had this there were no drugs to help. none. zero. nada. Now Orkambi and symdeko are big steps towards a cure. They're not end all cures but they're a way to slow the progression while we fight to find the key to the cure. And that's where you guys come in.
the Cystic Fibrosis Foundation move 90 cents of every dollar to research. so 90% of the $ you donate go directly to finding cures for my girls. Or as we call it. Adding tomorrows. The current life expectancy is up to 35. But that still means 25% of these kids are dying before they graduate from high school! That number is going to keep going up as we keep funding these developments.
There's a lot of good charitible causes out there. The CFF is a great one. And i hope you'll consider donating to this fundraiser. I'm riding 60 miles to raise $. Last year we were the 13th highest ranked team in the country. And the highest ranked team on our ride. I'd love to keep that streak going.
here is the link to my cycle for life page.
Pittsburgh CF Cycle for Life 2018: Ryan Dunbar - Cystic Fibrosis Foundation
and some gratuitious pics of the girls lol. Here's amelia in hawaii getting her wish of swimming with a dolphin.
The girls on amelia's make a wish trip with a turtle
My wife took them for pedicures after a long clinic day at the hospital
and then the not fun stuff... This is what you don't see on facebook. The childhood these girls face with amazing courage.
Anyway. Thank you for considering my fundraiser and helping to give my girls more tomorrows!
