Team CF at the Chicago Triathlon and meeting with Steve

The day after our racing adventure, we headed to downtown Chicago to see Colin's uncles in the Chicago Triathlon. Uncle Bryan was competing in the triple - three tris in 24 hours. Insane, I know. Uncle Mark was competing in the tri for Team CF. Both did great and we're always proud to see them doing their part to find a cure.



At the finish line, we bumped into Steve Ferkau. I doubt it was a total accident, Steve probably saw the CFF banners or knew someone competing.  Steve is an amazing guy.  Probably one of the most uplifting people we know, in fact.  Steve has cf and about nine years ago, received new lungs.  He was at 10% capacity at the time, wheelchair bound, and the outlook wasn't good.  He had been passed over or the opportunity fell through a number of times for other lung transplants for him.  Then, he received his gift.  Unlike some transplants, this wasn't just an insert of a new organ and Steve went on his merry way.  Steve received his lungs from a teen in Iowa who was killed in an accident.  Steve made the connection with the family and to this day he carries around pictures and articles of the girl that saved his life.  Within a couple months of the new lungs, Steve was climbing stairs at work that seemed an Everest to him in the past.  Not only that, but he started doing the stair climbs in Chicago: Aon, Hancock, etc.  He leads Kari's Klimbers in those stair climbs and raises a lot of money for organ transplant organizations.  He tells this story way better than I do, so I encourage you to check it out here.  And I highly recommend that you stop and talk to him the next stair climb you see him at.  You'll never talk to a happier, more upbeat person.

Racing to a Cure

Last week, we were asked by CFF if Colin would like to head out to Chicagoland Speedway and meet with a real racecar driver. We jumped at the chance.

The backstory: Beasley Allen is a national law firm. They have someone on staff with cf and to show their support, they give CFF a spot on their car for publicity. At the towns they visit for races, they try to put together a meet and greet with a local cf family. We happened to be that family in Chicago and we couldn't have been more thrilled.

We met the kids as they were getting out of school at 2:30 and headed as fast as we could to Joliet to meet up with Grant Enfinger, who drives car 83. He's also the mechanic, the rig driver, the janitor, you name it. He was an exceptionally nice guy and showed Colin around the car and even let him sit in it.

The PR woman mentioned that we could visit the winner's circle if Grant won the race that night. We figured it was a long shot, more of a tease than anything, but we hung out for the race.

Grant started the race in a position in the high teens, maybe even low twenties. On the final lap, he was in second place, a hair behind the leader. He crossed the finish line just a 1/2 length behind the winner. never have we been so involved in a race, jumping up and down and cheering him on the entire way. It was pretty exciting.

I was thinking about the race and realized that it's a lot like cf and fundraising to find a cure. Both are a long race. They take a lot of money, determination, drive, and it takes the best to even stay in the race, much less win it. In the end, Grant hasn't yet won, just like we haven't won, but he was so close. It was in sight, he could taste it, he could see the checked flag, but he hasn't yet won. Just like us. His day will come, and so will ours.

It reminded me of a story that was told to us at the very first event we attended for cf about seven years ago. We were the guests of the chair family, even though they had never met us. They wanted us to see a big event because someone saw potential in us way back then (or they saw suckers about to dive in head first into a whole lot of work - poh-ta-toe/pa-ta-tow). Anyway, the chair, a really down to earth, realistic guy sat us down and told us his view of this damn disease. It also had a car theme.

Cf is a car racing down the road. This is no Yugo or Bug. It's a big, old eight cylinder 4 ton caddy. Our kids are playing in the road. We'd do anything for our kids to push them out of the way of that barreling car, but there just is no way to put yourself in that position. There's no pushing them out of the way, there's no taking their place. So instead, we fundraise. We grab the bumper of that car (we fundraise) and we tell all of our friends to help us grab that car bumper. We dig our heels in and we don't let go. We're doing everything we can to slow that car down and give the scientists time to find a cure.

Whether it's a race that we almost just won or whether we're grabbing the bumper to slow the car down, we're super close. It's coming. It's going to happen in Colin's lifetime and it's going to happen soon enough that he'll be able to live to an age where he can almost forget it ever happened. Maybe he'll be racing cars....who knows, he has a long full life to decide.

Uncork A Cure

Please join us on November 7, 2009 at Maggiano's in Naperville for our second annual Uncork-A-Cure benefiting the Cystic Fibrosis Foundation. More info coming soon.

09/06/09 Update:  We now have tickets for sale online.  There's an early bird discount, so please go out today and buy your tickets at UncorkACure.com

Long overdue

Dear Family and Friends of Colin,

We wanted to take a moment to thank you from the bottom of our hearts for your continued support of Colin’s Clan and the Cystic Fibrosis Foundation. This year the walk on June 13th raised over $17,000 in Colin’s name for research to find a cure. It started out a little rainy, but we had a super turnout at the walk site and then a very fun gathering at our house that evening. Thank you all for coming out and supporting us in person and online. We are absolutely touched that you have made our cause one of your own, many of you even reaching out to your friends and family. We really do appreciate it and we continue to be in awe of all the generous people we know.

Your donations really are making a difference, allowing the researchers at the Cystic Fibrosis Foundation to achieve so much. This year the drug VX 770 advanced to FDA phase three trials, meaning people living with cf tried the drug and saw a drastic improvement in the symptoms of cf after only two weeks of taking it. We are THISCLOSE to a cure, but there still is work to be done and we will continue working hard until we get there.

We would also like to take this opportunity to thank all the fantastic people who attended our first annual wine event this past November at Tango. It was a HUGE success, and the net profit of the night was over $36,000! We all had a great time and we are looking forward to kicking off to the holiday season this year when we bring the event back at Maggiano’s on Diehl in Naperville on Saturday, November 7, 2009. We love being with all of you at our events and having you with us on the journey to find a cure.

Colin is doing well and has just started a full day of school in first grade. He loves his teacher and is really digging all the time on the playground. He is about to start another year of soccer and is thinking about taking up swimming with his big sister. We are working through all of the kinks to get Colin through the full day of school with all of the medicines and treatments he does before, during and after school and trying to keep a handle on the most important part of his day, EATING. We are praying for a healthy fall, winter and spring season.

We want you all to know that you really are the best family and friends that anyone could ever ask for. We are forever honored and grateful for the amazing generosity you continuously show in our son’s name. Despite this uncertain economy, you came out in great numbers over the past year to support the many events we hold to raise money and awareness to help find a CURE for Cystic fibrosis.

Thank you and please keep the Save the Date postcard handy if you are a wine enthusiast or just like to come to a fun night out. We are deep in the planning stages for this event and if you can help in any way we truly appreciate it.

Thanks again,
Trisha, Chris, Colin, Allison and Megan Walsh

New home

You are looking at the new home of Cure CF Now. It's Sunday morning and I am monkeying around at the kitchen table while the kids get going. Anyway, I am not done moving over from the old hosted spot. Hopefully this coming week I will move over completely.

Why the move? A couple of reasons: 1. Blogger/Blogspot is a Google property. I recently began working at Google and decided I'd be using Google products. 2. Blogger allows some context specific ads in the right side of this blog. I get income from those ads, which I plan to donate back to cf research. Not a bad circle if you ask me: Google employs me and even allows me time to do this, I use their products which in turn pay me back, I donate that money to research and in the process can get matching from my employer. Win-win-win.

Maps for the walk and after-party

http://maps.google.com/maps/ms?ie=UTF8&hl=en&vps=1&jsv=160h&oe=UTF8&msa=0&msid=101663094029977890185.00046b87ecfeb8f8909bb

Be a part of our walk team!

Spring is upon us and that means our annual Great Strides Walk for Cystic Fibrosis.

On Saturday, 6/13, we'd love to see all of you come out to the walk at the Naperville Riverwalk Pavilion or to the after-party at our house. The walk is always just the right length (not too long) and the day is really family friendly, including breakfast and lunch, a DJ, and a few surprises. The after-party at our house is open to everyone, whether you walked or not.

This will be Colin's 7th walk. Those first months threw us so many curves and so many unknowns all at once and only because of all of the help of our family and friends did we make it through. So, so much has changed since Colin's first walk, when he was just two months old. The median life span of someone with cf has increased from 31 years old to 38 years old and better, more effective drugs now exist that cut down on the number of pills he has to take during the day and the amount of time he needs to spend on nebulizers, which is currently at about an hour a day.

There is one thing that hasn't changed since the time Colin was born: There is still no cure for cystic fibrosis. There is still a shortened lifespan, there are still numerous drugs a day, there are still doctor and hospital visits a half dozen times a year.

We relied heavily on our family and friends to help us those first few months of Colin's life and we continue to rely on you. There are some absolutely amazing drugs in the works and a greater hope now than ever before that we'll see a cure to this disease in Colin's lifetime. But we're not there yet. The drugs in the CFF pipeline require over $100million in funding every year to keep the research and trials going. As you are no doubt aware, there's been a bit of a financial issue going on in the world and our fundraising has not been immune to it. Unfortunately, this disease hasn't paused while banks figure out their plans.

Please help us this year. We completely understand the financial situation and we're not looking for massive donations. We're asking you to donate what you can, and because asking is free, we'd like you to ask your friends and family for whatever small donations they can provide as well.

Please donate and help us find an end to this disease. Thank you so very much.

1. Online Donations: http://www.cff.org/Great_Strides/ChristopherWalsh594873196(Press Click to Donate at the bottom)

2. Join our team (6/13 at Riverwalk Grand Pavilion) and donate at the walk: http://www.cff.org/Great_Strides/ChristopherWalsh594873196 (Press Join My Team at the bottom)

3. Come to our party and donate there. Shoot me an email and I'll provide details as the day gets closer.

Chris and Trisha Walsh

Chris@CureCFNow.com

Naperville Great Strides - June 13

Why are updates here so few and far between?? Work, being a soccer coach, running the hugely successful Casino Chicago (I almost broke my arm patting myself on the back there), kids birthdays, communion, ..... Anyway, the Great Strides walk is here again and as every year, we're scrambling to get everything ready. This year is a little tougher because of the economy, but the same committe we have every year (Trisha, Patti, Kirsten) is busting butt to get it done. I'll update again here soon with more details. http://www.cff.org/Great_Strides/ChristopherWalsh594873196

Catching up...

Another huge delay from me in updating this site. I've been doing more than writing. What has happened since December?

The Naperville wine event was closed out and was very successful. We actually just just started planning for the 2009 event and may have found the venue yesterday. Stay tuned.

Poker is underway. I spent a lot of time this year talking to other charities and how they do their tournaments. Picked up a few tips and a lot of great contacts. Learned a few laws along the way too. This year's CFF Casino Chicago is April 4th.

Walk talks have started. We had the first one at our house about a month ago. A couple new committee members. Not much to report yet.

CFF will be in the South Side St. Patty's Day parade again this year. For the first time in years it sounds like a number of people will actually come out for it. We had a dismal showing for a few years after we were grand marshal, which was a little embarrassing. Hopefully we come back strong this year.

Hopefully more updates to come. I find it easier to update Facebook and LinkedIn with events, so hopefully I can find an easy way to update this site as well. No clue if anyone even reads it, but maybe someday I'll have something interesting enough for people to come here regularly and read.