So first things first, I really do suck at blogging. I have a New Years' Resolution post that I starting writing almost three months ago still saved as a draft... pretty bad, I know. But my mom has been bugging, I mean.. sweetly encouraging me to get back into it (mostly because she keeps telling her grad school classmates about my blog, and then remembers I don't write on it... ha), so I told her I would give it a shot. Fortunately for her, I have a great topic to start things off!
Every year, the Cystic Fibrosis Foundation host a national fundraiser called Great Strides. Since starting as an intern with them in 2011, I have been active with fundraising as well as working at the walk. Below is my fundraising letter for this year, which coincidentally, also functions as school project.
I am taking a human services class called Fundraising for Non Profit Services and our final/term project is to host a fundraiser of some kind. Funny how that worked out. Definitely killing two birds with one stone, or maybe even three since it gave me a reason to blog again :D
I am taking a human services class called Fundraising for Non Profit Services and our final/term project is to host a fundraiser of some kind. Funny how that worked out. Definitely killing two birds with one stone, or maybe even three since it gave me a reason to blog again :D
Hello friends and family,
Happy Spring! I hope you are doing well. I am writing because for the second year now, I have committed to being a team leader and fundraising for the CFF’s annual fundraising walk, Great Strides. Great Strides is an annual program that occurs all around the country to raise money for the Cystic Fibrosis Foundation and their fight for a cure. My team, the Monarch Marchers will consists of myself and fellow ODU students walking on April 26 at Neptune’s Park in Virginia Beach, Virginia.
As most of you know, cystic fibrosis is the genetic lung disease I was diagnosed with at 7 weeks of age. Cystic fibrosis is a chronic illness that primarily affects the lungs and digestive system of over 30,000 children and adults in America. This gene causes the salt channels in the cell wall to malfunction, which prohibits salt from entering and exiting the cells at a normal rate. This salt imbalance then causes abnormally thick mucus to clog the lungs, leading to life-threatening infections and irreversible lung damage, as well as obstructs the pancreas from producing digestive enzymes that allow the body to properly absorb food.
Currently, there is no cure for CF. In 2013, it was announced that the average life expectancy was raised from 37 to 41, which is AWESOME news, but there is definitely still room for improvement. By those statistics, I am already “middle aged” and I haven’t even graduated from college yet.
In the past few years, things have changed tremendously for cystic fibrosis patients. A drug company called Vertex Pharmaceuticals has been diligently working on a groundbreaking new medication called Kalydeco. This drug is one of a kind because it is the first ever to actually “cure” the problem in CF by opening the salt channels, rather than just correcting a symptom of the disease. The patients who have received Kalydeco so far are responding fantastically with both increased lung function and weight gain. Unfortunately, this particular drug is only effective on a specific gene mutation of CF affecting just 3-4% of patients. Vertex is currently working on a second drug to be used in combination with Kalydeco to treat the most common mutation, the one that affect myself, as well as 70% of all patients. This combo drug study will be completed in April 2014, and is expected to be available to the public by mid 2015. It is showing promising results, but due to the complexity of the remaining gene mutations, it is likely that Vertex will need to continue their research to find the optimal combination so that all patients can receive this miracle drug.
These developments are game changing for the CF world. One harsh reality of cystic fibrosis is that it is a progressive disease. As time goes on, more and more damage is done to the body and ultimately, this damage is fatal for all patients. Even the most diligent of patients cannot avoid this fact. I pride myself on being a very upbeat person, who always finds the silver lining in situations, but I have to be honest, that gets really difficult when you know that biology itself is working against you. These new medications change all of that. For the first time in my life, I can realistically dream and plan for my future because I know that there is help on the way. Just over a year from now, I will be a college graduate. I will be starting my career in the field of public relations. And I will be taking the new Vertex medication with utmost gratitude to every researcher, doctor and donor who made it possible.
The CFF has contributed over 90 million dollars to date to help Vertex with research efforts for Kalydeco and the combo study. We are very close but we have to finish the last lap, and your support will help. All proceeds from this walk will go directly to CFF and 89 cents of every dollar is put towards research.
Making a donation is easy and secure. All donations are 100% tax-deductible and can be done online through this link, http://fightcf.cff.org/site/TR/GreatStrides/130_Virginia_Richmond?px=1252037&pg=personal&fr_id=2324
Please help me and the CFF cross the finish line with our heads held high, looking confidently towards a future of health and happiness.
Sincerely, Jillian Goodwin
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