I know, I know…so much for blogging every day! As it turns out, trying to blog every day during your birthday month is extremely hard! I’ve been super busy and not able to dedicate the proper amount of time to my blog that each post deserves. Even so, I have learned so much about charities, what they do, how they work and why we need to support them.
Yesterday was my birthday, and in honor of that, I am highlighting a charity that DIRECTLY affects the family of one of my bestest friends in the entire world, Kristen.
Picture a typical teenage girl, right around the age of 14. She loves boys, puppies, and sunny days. It’s the day of her favorite cousin’s wedding – a New Year’s Eve wedding! It’s mere hours away from being 2012! She is a junior bridesmaid and gets to get her hair and makeup done along with the rest of the girls! But instead of gabbing and drinking (virgin!) mimosas with her fellow bridesmaids, Kate is sitting, listening to her iPod while an electric vest vibrates her entire torso, shaking her lungs free of thick mucous that could severely inhibit her breathing. She insists that the daily 90 minutes of various treatments really aren’t so bad.
Cystic Fibrosis is an inherited disease that affective the lungs and digestive system. It is a “life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.
Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.“
When it comes to “getting” CF, it is all in your genes. When I asked Kristen about this, she said “It’s a basic Punnett Square!” My verbal response was “Oh yeah! I remember that from high school biology! Totally. Got it.” My inner response was, “Uhhh….I know I remember learning that, buuutttt….what?” So, if you’re like me and don’t exactly remember 10th grade biology, here ya go:
A Basic Punnett Square for CF:
How this can be interpreted (blonde version):
C- normal allele
c- allele with CF mutation
In this example, each child would have:
25% chance of being unaffected with Cystic Fibrosis (CC)
50% chance of being a carrier of Cystic Fibrosis (Cc)
25% chance of being affected with Cystic Fibrosis (cc)
Because of the thick mucous, Kate has to work harder than her field hockey teammates just to be able to breathe, let alone breathe deeply while exercising. But does that stop her? Hell no.
“It’s definitely harder running. My lung capacity is smaller, so running is harder and I cough more when I’m running,” said Kate, who played varsity as a freshman and has started the last two seasons. “It’s harder to breathe, but I don’t notice it unless I am sick or have a lung infection.”
Years ago, the life expectancy for people with CF was only elementary school age. A person with CF can expect to live “into their 30s, 40s and beyond” today, thanks to research funded by the Cystic Fibrosis Foundation.
Cystic Fibrosis Foundation
The CF Foundation has funded more “research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.” Their “focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.”
Not only does the CF Foundation fund research, but they also advocate for people living with CF. They work to keep CF funding at the forefront of the government’s mind.
Kristen’s 21-year-old cousin Matthew (older brother to Kate) is currently participating in a 2-year clinical trial, Vertex 809 with Kalydeco, funded by the foundation that is changing the face of this disease. It is the first drug to treat the underlying cause of CF. Matthew’s health improves daily because of the medication.
Wanna contribute to the Cystic Fibrosis Foundation??
Donors can feel good about their contribution because of trials like the one Matthew is participating in. Money goes towards the trials that are are directly lengthening and saving people’s lives, NOT into the administrative pockets. Click HERE to donate and HERE to see exactly where each dollar goes.
Every year in Columbus, the local CF Foundation chapter hosts a bevy of fundraising events. One of these events is hosted by Matthew and Kate’s parents, Tom & Marie – the Hennessey Family Fore-Love Golf Outing. Played at Brookside Country Club, “a shotgun start begins a day of great golf, food and entertainment. Raffles, live and silent auction and a fabulous dinner round out the event.” Kristen and her family volunteer at the event in support of Matthew and Kate.
The Fore Love event is just one of many fundraising opportunities available. If you are in or near the Columbus area, you can check out the event calendar HERE!
Not in CBus?? BUMMER! 😉 Click HERE to find your local CF Foundation chapter!
Matthew and Kate refuse to allow their cystic fibrosis hold them back. Matthew is studying Political Science at Ohio State University and has had internships in Washington, DC and Columbus. Kate is finishing her junior year of high school and hopes to play field hockey at Georgetown, following in her mother’s footsteps.
“I have never been held back. I’m definitely a doer, never a quitter…I think (having cystic fibrosis) helps me. It pushes me to persevere a lot more. It’s how I overcome things. I can do this and nothing’s going to hold me back.”
You go, girl!
Find CFF: Columbus Chapter on Facebook at www.facebook.com/CFFCentralOH