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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

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

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.

Came across this today and thought it had some good ideas.

The Give List

It’s been a while since I posted anything. The wine event had us really busy and then it was right into the holidays. The wine event was a fantastic evening. Attendance wasn’t what we had planned, but in hind-sight, this is a good thing. We had a packed room. The sommelier, Arthur Black, went out of his way to travel up from Indianapolis to be present for the event and give it some prestige. We had the opportunity to go out to dinner with him the night before and it was interesting and entertaining. I’m not a big wine lover myself, but the way he described the wines we tasted and the things he pointed out showed me a whole new side of wine. Back to the event, the turnout was great and the attendees were generous, which was a lt to ask given recent economic events. There were a couple of surprises in the Bid for a Cure following an amazing speech by Rosie Woods. Rosie is 45+ and has cf. Back when she was a child, she was the poster child for CFF one year. Like all parents at that time, hers were told she wouldn’t see ten years old. At her age, it’s a fantastic case for never giving up hope. Check out some pictures from that night.

Hello Family and Friends,

We would really like to thank you for your continued support of the Cystic Fibrosis Foundation. We have had another very successful year of fundraising. Once again, you blew us away with donations raising over $20,000 in Colin’s name in Illinois and totaling over $30,000 with our other three states. Chris and I were recently telling someone about the fundraising efforts we do to for the Cystic Fibrosis Foundation and we were referred to as “heroes” for working so hard to find a cure. We feel that all of you are our “heroes” for your endless (and I mean endless) support for our cause. We WILL get there someday.

Colin and Megan in front of Nektar

Thank you to Aunt Natalie Randolph and all of immediate and extended family and friends in New Jersey for making Colin’s Clan NJ so successful. Uncle Steven, Aunt Norma and Aunt Jeanette and all the others many who barely even know us and yet raise thousands of dollars every year in Colin’s name. You are our heroes.

Colin's Clan Florida

Principal Suchinski hangs out for CFF

Thank you to our friends, family and local businesses in IL. Each one of you touch us with your continued support through donations, participating in Team CF events, asking co-workers for donations, the Fasone’s Cool Colin-ade stand, coming out to our Museum Event in March and many of you returning and donating again in at the walk in June. You not only make your own personal donations but ask your family and friends to donate on behalf of Colin. You are our heroes. (We really hope we included everyone below that helped us with the Museum event and the Walk. If we missed you or someone you know, we thank you for your help.)

Advanced Data Technologies
Anderson’s Bookshops
Bar Louie
Barrones of Crestwood
Bendick Co.
Benefit
Bike Line of Naperville
Bliss Photography
Blue Island Rental
BounceTown
Braconi’s
Brookdale Music
Butterfield’s
Butterflies and Bugs
Carry Me Please
Casey’s Foods
Chicago Cubs
Chief Bryant Krizik and Orland Fire Protection District
Chismark Family
Christina Hall and Clif Bar
City Club
City Meat Market
Cleff Family
Connelly Family
Connie’s Pizza
Creative Memories
D.J. McCarthy and Company
Darnell Family
Debbie John
Designs by Nicole
Dominick’s
Edible Arrangements
Elite Sports Complex
Esser Hayes Insurance Group
Ethel’s Chocolate Lounge
FedEx Kinko’s
Frank Gironda
Gebhardt Family
Glowacki Family
Gotskind’s
Great American Bagel
Holiday Inn Select
Jill’s
Karen Crumback and CFF
Katie Lifka
Kid Snips
Krista Sherinian
Krizik Family
L.A. Fitness
LA Photo/Just Imagine It
Learning Express
Lia Sophia Jewelry
Lucky Strike Lanes
Luvbug Bowtique
Maggiano’s
Mary Kay Cosmetics
Messina Family
Michael Graham Salon & Spa
MidAmerica/National City Bank
Mistwood Gold Course
Morgan Schmidt and BestBuy Kankakee
Music Together
Naperville Park District
Naperville Running Company
NEC Display Solutions of America, Inc.
Occasions
Ogden 6 Classic Cinemas
Old Town Pizza
Olsen Family
Panera Bread Bolingbrook
Pediatric Health Associates, Ltd.
Pets, etc.
Raffi’s on 5th
Red Robin
Remote Control Hobbies
Riedy’s Tee Time
Russert Family
Saraboo Creek
Scarpacci’s
Schmid Family
Smith Family
Solvay Pharmaceuticals
Sports Clips
Starbucks
Supreme Felt
T.G.I. Fridays
Tango
Tender Care Lawn
Teri Burns Jewelry
Texas Roadhouse
The Boxes
The Comedy Shrine
The Honey Baked Ham Co.
Trader Joe’s
Ultimate Exposure Tanning Center
Unique Bowtique
Vino 100
Wallin Family
Walsh Family
WineStyles
Wozniak Family
Zelek Family and Pepsi

The Museum Event this past April 12th and the Great Strides walk this past June 14th were extremely successful and very fun days for all of us. We will not stop finding fun and interesting ways to raise awareness and more importantly the much needed funds to find a cure. We’re already on to planning our first Naperville Wine Event and the Fifth Annual Poker Event. Colin and the rest of us are so thankful to have been touched by all of you. See you soon.

Colin, Trisha, Chris, Megan and Allison Walsh
Walsh.Family@curecfnow.com

I came across an article this morning on a new inhalation device from a company in Israel called Aespironics. It’s extremely thin and promises to be really cheap.  From their Website, they describe it as:

Aespironics Inhaler

A tiny breath-activated turbine inside the inhaler beats at a mesh packet containing the drug particles. This releases all the particles into the air at the same time.

This article this morning reminded me that I never put up any info on Nektar’s product.  Nektar is a company based just south of San Francisco.  My brother works there as an senior engineer and they work to turn drugs into inhalable drugs.  They worked on insulin a number of years ago and now they are doing Tobi Inhaled Powder (TIP) and Cipro (CIP).  They have a new inhaler as well that they are trying to get through final phases of FDA.  Their device is very tiny as well.  I looked around for a picture on their website and couldn’t find one.  However, they have a nice video on the device here.

We’ve been talking about our wine event for many months and we took a small break during the Great Strides walk season.  We got back into it this week and encountered our first bump in the event.  It seems the restaurant we had booked for the event has gone under due to the economy.  They called the CFF office and refunded the money that was put down as a deposit, but now we are left with no location.  Trisha and I are heading out tonight for our anniversary and we plan on checking out a few other places in the same area.  This is just a minor hiccup, nothing we can’t get around.  Stay tuned.

This last Friday, June 27, Colin, his sister Megan, his mom, and I went to visit his uncle Kevin at work in San Carlos, CA.  Kevin works at Nektar, which develops Tobi Inhaled Powder and Cipro Inhaled Powder.  Kevin set up an opportunity for us to present what it’s like to live a day in Colin’s life.  About 50 people showed up and listened to us tell Colin’s story and the story of how we got involved in and continue to be involved in CFF fund raising.  When we were done, Colin got up and tried on his vest for everyone to see.  They asked a number of great questions related to things we have tried for Colin and how the work they are doing might help Colin and us.  They also had a few suggestions on things to look into for him, such as some basic yoga moves.  We’ll have to check into that.  We had a great time giving the speech and hope to be able to go back in a year or two for some updates. Later that day, Colin came down with a fever and general sickness that one of his sisters passed to him, so we at least know why he wasn’t his cheerful self in the presentation.  He got over it within the day and got to enjoy the rest of our San Francisco trip.