Wednesday, January 9, 2013

We're Making Great Strides in Cystic Fibrosis

To Our Family, Friends, Neighbors, and anyone else taking the time to read this note,

Happy New Year! I hope that this messages finds you well. We are currently living in isolation with the fear of catching the flu or RSV. We are close to driving each other nuts, but I'd rather go nuts here all together than have Drew in the hospital with a life threatening bug. 

I have spent much of my time this past year involving myself in quality improvement projects with the Cincinnati Children's Cystic Fibrosis Clinic and the Cystic Fibrosis Foundation. So many amazing things are going on right now and I am thrilled to be a part of it all. As you know, Cystic Fibrosis is considered and "orphan disease" because so few people have it. Because of this, the value to pharmaceutical companies to invest money in new therapies and treatments just isn't there. Developing a single new drug can cost a billion dollars, so pharmaceutical companies want to create blockbusters for common diseases like Alzheimer’s or cancer to maximize the return on their investment. The Cystic Fibrosis Foundation came up with something called "Venture Philanthropy", where they invest our fund-raised money with the pharmaceutical company to do the research and create the drug, absorbing the early financial risk involved in drug development as a way to entice for-profit companies to get involved in cystic fibrosis research. Amazing things are happening. There is a drug on the market now that essentially cures about 4% of the CF population. A CURE! Because of this successful business partnership, the CF Foundation has invested another $75 million  toward finding a cure for the other 96% of the CF population. There is another drug in the pipeline that will help a large majority of the CF community. There are clinical trials going on right now, and this drug, that will likely help Drew and thousands of other kids with CF, is showing promising results. None of this would be possible without the Cystic Fibrosis Foundation. 

I know that it's easy to get burnt out on CF stuff. I live it. Every. Single. Day. I'm sick of medicines and treatments and appointments and hospital stays and fundraising and everything else in between. But just yesterday a little 8 year old boy lost his battle with CF. I have to continue to fight. I have to continue to email and ask for support and raise awareness. And that's why I'm writing you tonight. 

Earlier this evening, I was on a call about Great Strides, the Cystic Fibrosis Foundations annual walk and largest fundraiser. The topic of the call was growing your team. It's not easy to call and write and email people every year, asking them to donate and walk with us and show their support. I don't like to do it, but it pales in comparison to all that Drew has to do in a day that doesn't feel good and that he doesn't like to do. Drew looks like a normal kid. What most of you don't see is the hours that we spend on a daily basis administering medications and doing different therapies. You don't see him cry 3 times a day every day when I have to do a nasal rinse that he hates because Cystic Fibrosis has left him with severe sinus disease. He rides in the car hooked up to a nebulizer machine to get his afternoon medicines in so that we don't have to stop our play time to get it done. Instead of visiting his grandparents in Connecticut this summer, he was stuck in Children's Hospital of Philadelphia because he got a terrible lung infection that had him on oxygen and IV antibiotics until he was able to breathe appropriately on his own. He cries when I take one of his sisters to Target but won't let him go because of the vast array of things that he could pick up from a shopping cart in January. 

Whenever we are down and out or just having a bad day because of insurance problems or normal everyday stresses, my friends ask me what they can do to help. Family members and neighbors and sometimes total strangers who catch us in a bind will tell us to let them know if we ever need anything. What we need the most is a cure for this disease. I don't want Drew to have to deal with this anymore. I don't want to have to waste my days on the phone fighting for medications or making appointments or calling about the days concerns. I don't want to have to worry every day that he will catch something that he won't be able to get over or that he will be the next sad story of a young life lost to Cystic Fibrosis. 

I'm asking for your support this year as we walk for a cure. I'm asking your to sign up to walk with us and to share our story and fund raise with us. I'm asking for you to help us find the cure for Cystic Fibrosis. The walk in Cincinnati this year is Saturday, May 18 at 9am. There are walks in every city in every state. If you can't walk with us in our city, walk for us in yours. Gather your co-workers and create your own Doin' It for Drew team. Ask your neighbors and friends if they will support you in supporting us. Raising money to support the search for a cure is the only way that we will get what we want - a life free from Cystic Fibrosis. 

If you can join us in our efforts this year, please visit the Great Strides Website to register for a walk near you. Make sure you register under team Doin' It for Drew. I will support you however I can in your fundraising efforts. If you are unable to join us in our fundraising this year but want to make a donation, you can do so by visiting our Great Strides Page. We truly appreciate you taking time time to read this note and any and all support that you can offer. 

Best Regards,
Erin Moore
Drew's Mom

Facebook - Doin' It For Drew
Twitter - @ekeeleymoore

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