Joe Martin
THANK YOU!
First and foremost, thank you for taking the time to follow this link and investigate my initiative.
To fund the research and, ultimately, bring about a cure for the genetic condition Cystic Fibrosis. This is the goal of the Rose Up fundraiser, and one that I am directly impacted by.
How I’m fundraising!
Bees! I’m a beekeeper! It’s a hobby I took up in 2020 and have been fortunate enough to keep learning and engaging in. This year I’ll be donating 100% of the profits generated from honey sales towards my Rose Up campaign goal! If you’re in the Cleveland/NE Ohio area, or you want some mail order honey, shoot me a message! Quantity is limited! Donations are not!
Cystic Fibrosis?
(semi-mind-numbing medical jargon incoming!)
At the head of the Cystic Fibrosis ‘river’ is a rare genetic mutation (affecting roughly 40k people in the U.S.) which orchestrates the production of a ‘malfunctioning’ channel protein on the membranes (the outside barrier) of cells. This inhibits the proper flow of chloride (salt), causes mucus to build up and results in a cascade of symptoms that flow downstream throughout the body.
Lung congestion, infection, scarring and deteriorating function. Impeded enzyme flow in the digestive tract, digestion issues, nutritional/caloric deficiencies, the onset of diabetes. These are just a few of the many complications that afflict those with the condition. Cf genetic mutations vary, and the experience of CF affects each person differently in a range of severities and symptoms.
Kiki and me?
That includes Kiki (My sister Katie) and myself. While I’ve experienced slightly decreased lung function and digestive issues, I’ve been fortunate to retain, overall, great health for someone with the condition.
Five years my elder, Katie experienced a much more challenging life with Cystic Fibrosis enduring exhaustion, constant respiratory infections, diabetes, gastroparesis, constant arthritic pain, and enough time spent in hospital rooms that she started decorating them like her bedroom and selling jewelry to her nurses.
What are the donations going towards?
In addition to a lot of support, hard work and luck my good health is indebted to a lifetime of treatments and medications. Treatments and medications that are developed through complex, expensive scientific research, which are funded by fundraisers like this one!
In recent years there have been very, serious, breakthroughs in cf medications. For the first time in the history of the disease Genetic Modifiers are now getting to the root cause of the condition - those channel proteins I mentioned above - and significantly increasing the average cf life expectancy - from 26 years in 2008 to a current 65!!!! Give! Me! Life!!!!
But they are not a cure, not without side effects, and most importantly, they do not help everyone with the condition. Something that could change with continued research!
I benefit from the latest version of the gene modifiers. Katie, having a more deteriorated condition and also enduring more negative impacts from the side effects, could not.
We lost Katie in the summer of 2021. After a year spent with more time in the hospital than out, in constant pain and rarely able to eat, a declining lung function dropped her into a coma. A few days later, she was gone.
Katie was fierce, impeccably dressed, a loving mother, a protective, supportive older sister, and my companion through the experience of this condition. Those of us who knew her will carry a part of her with us, always. But her loss is permanent, her suffering was remarkable, and both can be alleviated and avoided in the future of others with this condition.
If you’ve made it this far through the page I thank you, again, for your time. Please consider donating to my Rose Up campaign and bringing a positive impact to those living with Cystic Fibrosis.
Sincerely,
Joe
Let’s ROSE UP together!
#ROSEUPCF
First and foremost, thank you for taking the time to follow this link and investigate my initiative.
To fund the research and, ultimately, bring about a cure for the genetic condition Cystic Fibrosis. This is the goal of the Rose Up fundraiser, and one that I am directly impacted by.
How I’m fundraising!
Bees! I’m a beekeeper! It’s a hobby I took up in 2020 and have been fortunate enough to keep learning and engaging in. This year I’ll be donating 100% of the profits generated from honey sales towards my Rose Up campaign goal! If you’re in the Cleveland/NE Ohio area, or you want some mail order honey, shoot me a message! Quantity is limited! Donations are not!
Cystic Fibrosis?
(semi-mind-numbing medical jargon incoming!)
At the head of the Cystic Fibrosis ‘river’ is a rare genetic mutation (affecting roughly 40k people in the U.S.) which orchestrates the production of a ‘malfunctioning’ channel protein on the membranes (the outside barrier) of cells. This inhibits the proper flow of chloride (salt), causes mucus to build up and results in a cascade of symptoms that flow downstream throughout the body.
Lung congestion, infection, scarring and deteriorating function. Impeded enzyme flow in the digestive tract, digestion issues, nutritional/caloric deficiencies, the onset of diabetes. These are just a few of the many complications that afflict those with the condition. Cf genetic mutations vary, and the experience of CF affects each person differently in a range of severities and symptoms.
Kiki and me?
That includes Kiki (My sister Katie) and myself. While I’ve experienced slightly decreased lung function and digestive issues, I’ve been fortunate to retain, overall, great health for someone with the condition.
Five years my elder, Katie experienced a much more challenging life with Cystic Fibrosis enduring exhaustion, constant respiratory infections, diabetes, gastroparesis, constant arthritic pain, and enough time spent in hospital rooms that she started decorating them like her bedroom and selling jewelry to her nurses.
What are the donations going towards?
In addition to a lot of support, hard work and luck my good health is indebted to a lifetime of treatments and medications. Treatments and medications that are developed through complex, expensive scientific research, which are funded by fundraisers like this one!
In recent years there have been very, serious, breakthroughs in cf medications. For the first time in the history of the disease Genetic Modifiers are now getting to the root cause of the condition - those channel proteins I mentioned above - and significantly increasing the average cf life expectancy - from 26 years in 2008 to a current 65!!!! Give! Me! Life!!!!
But they are not a cure, not without side effects, and most importantly, they do not help everyone with the condition. Something that could change with continued research!
I benefit from the latest version of the gene modifiers. Katie, having a more deteriorated condition and also enduring more negative impacts from the side effects, could not.
We lost Katie in the summer of 2021. After a year spent with more time in the hospital than out, in constant pain and rarely able to eat, a declining lung function dropped her into a coma. A few days later, she was gone.
Katie was fierce, impeccably dressed, a loving mother, a protective, supportive older sister, and my companion through the experience of this condition. Those of us who knew her will carry a part of her with us, always. But her loss is permanent, her suffering was remarkable, and both can be alleviated and avoided in the future of others with this condition.
If you’ve made it this far through the page I thank you, again, for your time. Please consider donating to my Rose Up campaign and bringing a positive impact to those living with Cystic Fibrosis.
Sincerely,
Joe
Let’s ROSE UP together!
#ROSEUPCF
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