Cure CF Now

This gets the point across

2010-05-08T16:56:00.000-05:00

I don't repost a lot on this blog, but this video really gets the point across very well.

2010 Great Strides Walk

2010-05-08T16:47:00.000-05:00

We would like to invite you to come out to our annual walk for Cystic Fibrosis in honor of our son Colin. This year we are participating in our eighth walk to help find a cure for CF. Many things have changed since last year. First of all the date for our walk is in May this year. The walk will take place on Saturday, May 22, 2010 at the Naperville Riverwalk with an evening party option at our home as well.

The other big change this year is that we exhausted all of our attempts and options to help Colin to gain and maintain a healthy weight. After three long years of apprehension, we decided to take our doctor’s recommendation. Colin had a surgery this past November to insert a permanent feeding tube in his stomach. He now receives nightly feedings that amount to over 700 additional calories. The most exciting news for us is that this surgery and his recovery went very well and Colin has gained over 5lbs since November! The feeding tube adds quite a bit of work and time to Colin’s already busy routine of AM and PM treatments, medicines and therapies. However, we know we made the right decision and we are grateful that this technology and treatment is available to help our son.

The technology and treatments are what brings us to writing this very important letter and pleading for your continued help and support. Many important advancements and great strides in research have been made this past year because of your generous donations. However, there still is no cure for cystic fibrosis and we still need your help.

As always, we would love to see you out at the Naperville walk site. It is a really fun family day. If you cannot make it there come out to our house any time on the 22nd of May after 5pm. Most importantly, please donate whatever you can to the Cystic Fibrosis Foundation under Colin’s Clan to help find a cure.

Colin has really grown up a lot. He cannot wait for his soccer season to start and is having a great year in first grade. He loves school and has become quite the reader and writer! He also is really starting to become aware of all the amazing people who continue to work towards finding a cure for cf!!

Thank you in advance and we can’t wait to celebrate the advancements in CF research made possible by all of you. Please donate and help us find an end to this disease. Thank you so very much.

1. Online Donations (Press Click to Donate at the bottom)

2. Join our team (5/22 at Riverwalk Grand Pavilion) and donate at the walk (Press Join My Team at the bottom) Map

3. Come to our party and donate there. (Email me for info)

More Info:
http://www.curecfnow.com
http://www.colinsclan.com
http://www.cff.org

Thank you so very much,

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

2010 Naperville Great Strides

2010-03-16T12:22:00.001-05:00

(Colin is pointing here!!)

We would like to invite you to come out to our annual walk for Cystic Fibrosis in honor of our son Colin. This year we are participating in our eighth walk to help find a cure for CF. Many things have changed since last year. First of all the date for our walk is in May this year. The walk will take place on Saturday, May 22, 2010 at the Naperville Riverwalk with an evening party option at our home as well.

The other big change this year is that we exhausted all of our attempts and options to help Colin to gain and maintain a healthy weight. After three long years of apprehension, we decided to take our doctor’s recommendation. Colin had a surgery this past November to insert a permanent feeding tube in his stomach. He now receives nightly feedings that amount to over 700 additional calories. The most exciting news for us is that this surgery and his recovery went very well and Colin has gained over 5lbs since November! The feeding tube adds quite a bit of work and time to Colin’s already busy routine of AM and PM treatments, medicines and therapies. However, we know we made the right decision and we are grateful that this technology and treatment is available to help our son.

The technology and treatments are what brings us to writing this very important letter and pleading for your continued help and support. Many important advancements and great strides in research have been made this past year because of your generous donations. However, there still is no cure for cystic fibrosis and we still need your help.
As always, we would love to see you out at the Naperville walk site. It is a really fun family day. If you cannot make it there come out to our house any time on the 22nd of May after 5pm. Most importantly, please donate whatever you can to the Cystic Fibrosis Foundation under Colin’s Clan to help find a cure.

Colin has really grown up a lot. He cannot wait for his soccer season to start and is having a great year in first grade. He loves school and has become quite the reader and writer! He also is really starting to become aware of all the amazing people who continue to work towards finding a cure for cf!!

Thank you in advance and we can’t wait to celebrate the advancements in CF research made possible by all of you.

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/ChristopherWalsh5948 (Press Click to Donate at the bottom)

2. Join our team (5/22 at Riverwalk Grand Pavilion) and donate at the walk: http://www.cff.org/Great_Strides /ChristopherWalsh5948 (Press Join My Team at the bottom)

3. Come to our party and donate there.

A whole bunch of stuff I missed

2010-03-16T11:51:00.001-05:00

As usual, I am behind in posting. I missed a whole lot of things between the Tri (post just below this one) and today. A few of the major points:

In late fall, Trisha held her second annual Naperville Uncork A Cure. Fantastic evening and we raised $50k for CFF that night. Gene Honda, announcer for the Sox, was our emcee and he did a fantastic job. Great guy. Along with Rosie Woods, I gave my first real bid for a cure speech. I am a huge fan of the bid speeches, just not from me. It was emotional, but it worked out for the best. I'll put a separate post out on this with pictures when I get a chance.

In late November, we finally were backed into a corner and Colin went in for surgery to get a G-Tube. We fought it for three years, looking for alternatives and maybe sometimes denying that he really needed it. The surgery was a little rough on him, as was the first day of recovery, but since then, he has gained his first pounds in over two years. He gained five in the first 45 days. This deserves its own post...again, I will get to it later, with pictures.

Working on the Sixth Annual Casino Chicago (http://www.cfholdem.com). Check out the site, this is a fantastic night.

For good and bad, we have met a lot of new cf families in the last few months. We've probably scared one or two by talking to them, but we try to give is as straight as possible.

I'll try to spend some time with real posts for the items above. They all deserve a little space (even if no one reads this thing).

Team CF at the Chicago Triathlon and meeting with Steve

2009-09-07T08:21:00.001-05:00

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

2009-09-06T18:47:00.003-05:00

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

2009-08-24T12:58:00.007-05:00

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

2009-08-24T12:00:00.001-05:00

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

2009-07-26T10:34:00.000-05:00

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

2009-06-07T09:57:00.000-05:00

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!

2009-05-28T14:51:00.000-05:00

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

2009-05-16T17:35:00.000-05:00

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...

2009-02-27T08:38:00.000-06:00

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.

The Give List

2008-12-11T08:34:00.000-06:00

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

The Give List

Catching Up after a successful Wine Event

2008-12-11T08:33:00.000-06:00

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.

[vodpod id=ExternalVideo.759958&w=425&h=350&fv=host%3Dpicasaweb.google.com%26noautoplay%3D0%26RGB%3D0x000000%26feed%3Dhttp%253A%252F%252Fpicasaweb.google.com%252Fdata%252Ffeed%252Fapi%252Fuser%252Fchris.curecfnow.com%252Falbumid%252F5268154185441389457%253Fkind%253Dphoto%2526alt%253Drss]

more about "2008 Uncork A Cure Wine Event", posted with vodpod

Thank You!

2008-09-08T21:20:00.000-05:00

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.

[caption id="attachment_66" align="alignleft" width="300" caption="Colin and Megan in front of Nektar"][/caption]Thank You to Aunt Jeri Countryman and Uncle Kevin Walsh and Colin’s Clan CA and all of the fundraising and devotion you do for us. A special thanks to Uncle Kevin for going to work each day at Nektar the pharmaceutical company and working specifically on CF drugs to make Colin’s life and the others with CF have an easier time taking their medicine. You are our heroes.

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.

[caption id="attachment_64" align="alignright" width="300" caption="Colin's Clan Florida"][/caption]Thank you to Dina Sakowski and the newly established Colin’s Clan FL for letting us to know there are good people who work with Colin’s dad. We have never even met you, but you and your very supportive family and friends not only walked and raised over $3ooo, but you even made your own Colin’s clan shirts for our cause. You are our heroes.

[caption id="attachment_65" align="alignleft" width="300" caption="Principal Suchinski hangs out for CFF"][/caption]Thank you to Principal Kevin Suchinski and all of the staff and students at Hickory Creek Middle School in Frankfort,IL for raising thousands of dollars over the last four years. Thank you for inviting us to your school every May to give informative talks to all of your staff and students to educate them on what CF is and what it’s like in a day in the life of a CFer. You give us so much kindness and support while having a lot of fun every year. You are our heroes.

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

Inhaled Drug Devices

2008-08-05T13:07:00.001-05:00

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:

[caption id="attachment_55" align="alignleft" width="198" caption="Aespironics Inhaler"][/caption]

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.

A small bump in the Wine Event

2008-07-29T13:39:00.000-05:00

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.

Presentation at Nektar

2008-07-01T17:06:00.000-05:00

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.

2008 Naperville Great Strides Walk

2008-06-16T11:42:00.000-05:00

Colin's Clan had their 6th Naperville Great Strides walk this past weekend on June 14, 2008. The weather was perfect and the turnout was awesome. Check out the pictures:

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Colin's Clan - Great Strides Clay County Florida

2008-06-16T11:19:00.000-05:00

This year, we added a Florida chapter of Colin's Clan. Dina Sakowski formed a team and raised over $3500 in their first year. Way to go Colin's Clan Clay County!!!

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more about "2008 CC FL New", posted with vodpod

Local School Hung Up over Fundraising

2008-05-30T09:24:00.000-05:00

Principal Kevin Suchinski and the Hickory Creek Middle School in Frankfort, IL had a real hang up about raising funds for CFF this year, as you can see. Mr. Suchinski promised the school that he would hang on the wall an entire day if they raised $5000 this year in their own walk at the school for CFF. Colin's mother and father (Trisha and Chris) also promised to arrange for ice cream for the winning grade level. After a successful May 23rd walk, on May 29th, Mr. Suchinski, Chris and Trisha Walsh all kept their promises to the school. While Mr. Suchinski was stuck to the wall in the main foyer of the school, Colin's grandmother helped serve ice cream to 250 sixth graders. Local newspapers covered the event and Mr. Suchinski's hope is that the online donations will continue to come in once the story runs this weekend.

This all started four years ago when Colin's cousin Ashley attended Hickory Creek. Her teacher at the time wanted to get the students involved in some social awareness and fundraising campaign and a paper Ashley had written on cf was the perfect springboard. So, starting four years ago, when Colin was one, Trisha Walsh, along with Colin and his twin Megan, have given presentations to the school on what cf is and is not and have pumped up the school for their walk. Since then, the walk has become a school-wide event and Principal Suchinski is now ready to push the concept to the rest of the school district and Colin and his family plan to be there to help.

This year, the school has raised about $4000 and money continues to come in.

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more about "2008 HCMS New", posted with vodpod

Fund Raising Dos and Don'ts

2008-05-27T13:16:00.000-05:00

Fund Raising Dos and Don'ts from wisebread.com
by Nora Dunn

Recently and quite accidentally, my boyfriend and I found ourselves hijacking our vacation through Southeast Asia to become an International NGO on the fly.

Initially we had modest intentions of using our own resources to help get some water (a small truckload) to the Thai/Burma border for an aid agency on the inside to pick up and distribute. From there, the plans exploded with possibility, as we made contacts in Chiang Mai Thailand that turned a truck into a cargo plane load of supplies.

Over the following two weeks, we launched an international fundraising campaign, were featured on media outlets all over Canada, as well as in London, Sydney, and northern Germany. We did everything from the fundraising to working on logistics, attending local meetings, networking in Thailand, and giving media interviews.

This article is not about the Burma/Myanmar relief efforts though; it is about fundraising, and some of the dos and don’ts you can heed should you take on a fundraising campaign, large or small.

DOs

Take it One Step at a Time

Fundraising is like mountaineering – you must put one foot in front of the next, and not become overwhelmed by the initiative. One person (or one fundraising campaign) will not save the world…identify your mountain, and climb it step by step.

Big Businesses Give Big Dollars, but Small Businesses Give More Often

Although you may want to call on all the big-name corporations to meet your lofty fundraising goals, you may find that their corporate budget for charitable initiatives is spent well in advance, or requires weeks to months of paperwork to access.

Small businesses however, are happy to be approached, even happier if they can get their name shown as a donor, and have the ability to make quick donation decisions. You are much more likely to get $1,000 from five small businesses than $5,000 from one big business.

Go Local

Campaigning in your own neighborhood is a great place to start, depending on your project. Take a walk, and visit the new pizza joint that just opened. Again they may appreciate the subtle marketing plug in making a donation, and you get a chance to network with a new business owner, eager for traffic. Heck you may even find a new favorite pizza place in the process.

Do What You Say You’ll Do

If you make a promise to donors, then keep that promise. If you think there’s a chance you won’t be able to fulfill the promise, then don’t make it. People at large are jaded as it is; tired of donating money in an anonymous manner to conglomerates of aid agencies, only to find no accountability, and even worse – broken promises.

If you are a small campaign, then use it to your advantage by promising accountability to your donors. If you are working on behalf of a large campaign, find something you can promise, and keep that promise. A long-term relationship with a repeat donor is worth much more than a one-time donation with a mess to clean up afterwards.

Be Passionate (and Shameless)

Nobody will give you money if you are not absolutely passionate (almost to a fault) about your cause. You must be willing to talk to anybody and everybody about your cause, and not be afraid to suggest how they can help. Once they see the look in your eye, they will be moved enough to donate.

DON’Ts

Don’t Get Emotional

If you are raising money for something devastating and tragic, it is easy to become overwhelmed especially if you identify with those in need. Although channeling your emotions to make your case stronger with potential donors is okay, there is a fine line between compelling people with an emotional case, and turning them off by being an unprofessional blubbering fool. If people are to trust their money to your cause, you must be strong for them.

Don’t be Afraid to Call on the Big Guns

In our quest, we were in the process of contacting the King of Thailand to help us with some of the logistics of our initiative. (That particular aspect of the project fell through before we could get in touch with the Monarchy, but we were well on our way). If you can get past the gatekeepers, people in high places will often listen to your case and would like to help. It helps their own public image, and it obviously helps your project too. There’s nothing lost in trying, and a lot to be gained if successful.

Don’t Be Afraid to Ask

One of the big mistakes we initially made in fundraising was that we created quite a buzz among fellow travelers in Chiang Mai, but we didn’t come right out and ask for money. We simply expected people to hand over the cash. And in some cases they did. But eventually we realized we had to be shameless and simply ask. If somebody thought what we were doing was great, then we asked them to put their money where their mouth was (in a more delicate way of course). When they realized that even a few dollars could make a significant difference, they were happy to give – some people had automatically assumed that we were only going for sizeable donations, when anything would have sufficed.

Don’t Judge Your Friends and Family by Their Generosity (or Lack Thereof)

You may think your cause is worth taking out a second mortgage, but your friends and family may not. Or they may appreciate the cause but not feel they have the freedom to give. Or they may just plain not appreciate your cause. You can very easily make or break friendships by holding your dear ones accountable. Don’t. Although people starving en mass in your corner of the world may be a valiant cause to get behind, some people don’t have the capacity to think this broadly, and instead their own personal tragedies (however small they are in comparison) are all they can deal with. This is fair.

Last, but certainly not least…

Don’t Wear Yourself Down!

If you are a small operation and doing all the work (as many small charities are, and as we found ourselves to be recently), you can very easily burn out. If your own health fails, then you are no good to anybody, and the project could even collapse as a result. Make sure you take care of yourself. Yes, there is always work to do, and a few more dollars to raise. Keep it all in perspective, and remember tip number one: One Step at a Time.

You will eventually climb that mountain if you heed these dos and don’ts. And the view from the top is pretty spectacular, despite the crevasses and obstacles you had to manage along the way.

Good luck!

About Nora Dunn

As a Professional Hobo and Writer, with a background as a former Certified Financial Planner and Entrepreneur, I've got lots of bases covered - not the least of which are practical money matters. Nora Dunn's profile Nora Dunn's blog

Update on Poker, Museum, Walks, Wine

2008-05-19T10:00:00.000-05:00

I am finding it hard to keep up on this blog. I spend most of my free time actually working on the events that I should be promoting or discussing here instead of promoting and discussing. I am thinking about spinning off the "Cure CF now" portion and finding someone that just wants to CF blog and allowing them use of the name and space. It would be of much more value to people.

Update on Poker/Casino: The 2008 Horseshoe Casino Casino Chicago was held on April 18 at the Marriott Michigan Avenue. The night was amazing and went without any bumps. The entire committee did a great job and the volunteers were amazing. The room itself wasn't overly decorated, but for the first time in 4 years, we actually had space for everyone instead of trying to cram into an area 3/4 the size of what we needed. We really went big on blackjack, craps, and roulette this year and I am interested in seeing how it did compared to the poker side of the room. The final winner of the night was from Bears player Jerry Azumah.
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more about "2008 CFH New", posted with vodpod

Update on Night at the Museum: Trisha and Kirsten did an amazing job on museum. It brought in about $11k this year. The evening was great for kids with the museum wide open for them to play in and kid-centric raffles just for them. The silent auction did well too. It's a lot of work, but one of the few kid-friendly events for CFF.

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more about "2008 NATM New", posted with vodpod

Update on Walks: We hit 2 walks and a walk party this weekend. Overall, not bad. The CFF staff works like crazy to put these together and in general people are happy. The Orland Park walk had great weather and a good turnout. Unscientific guesses put the attendance a little lower than previous years. The Chicago walk was a bit colder and the guess on attendance was also that it was a little lower. I talked to a number of families and participants and there is still a LOT we can do to make the walks better. I'll end up talking to the CFF staff on what we can do to make it better and better.

Wine: Finally, it is off the ground. We had our first committee meeting in early May and 20 people attended. 20 people! That's a whole lot of people wanting to help us make a great event. We have booked the venue, Tessa's in Naperville, for November 8. We already have the sommelier scheduled to fly in the night before and attend the event. In addition, we have a live auction package of a trip to Sonoma, a private plane ride around the area, hotel, and a tour of some of the winerys. This should be huge. We are trying to figure out now what a VIP ticket for the event will consist of, what it will cost the purchaser, and what it will cost us to make it happen (free hopefully). Stay tuned.

Huge day for cystic fibrosis

2008-03-27T12:42:00.000-05:00

Today is a huge day in the fight to cure cystic fibrosis. This morning, the Cystic Fibrosis Foundaiton and Vertex announced that the Phase 2a trials of VX-770 have shown positive results in targeting the basic defect in cystic fibrosis. This is HUGE. This is the first time ever where a drug has shown results that actually reduced the chloride levels in sweat tests. As with all news like this, the Foundation cautions people to be "cautiously optimistic", but just the fact that something like this exists is exciting. Even if it fails, they have a base to build on for future drugs. It's coming!

Whenever I hear of things like this, I think about what a few of the volunteers I talked to when we first got involved would always say: "You think this gala is a big party? Just wait until the cure comes and we'll be throwing the biggest party people have ever seen." Today has the feel like we should be picking out invitation designs.

http://www.cff.org/aboutCFFoundation/NewsEvents/index.cfm?ID=8476&TYPE=1670

http://www.cff.org/aboutCFFoundation/PressRoom/2008PressReleases/index.cfm?ID=8475&blnShowBack=False&idContentType=3617&IDCT=3617

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=301749

Sometimes it's close to home

2008-03-04T13:32:00.000-06:00

My wife opened up the paper this morning to search for an article her friend was going to be in for the museum event. Instead, in both the local paper and in the Sun-Times, she found an article on a local reporter that passed from cf. Every time she sees these, it realy slows down the day and makes her (and me) think about what we are involved in. She posted out to her online support group and received a lot of great feedback mostly centering around the fact that cf today is worlds apart from what cf was 45 years ago.

http://www.suburbanchicagonews.com/heraldnews/news/823592,4_1_JO04_OBRIEN_S2.article

http://www.suntimes.com/news/obituaries/823966,CST-NWS-xobrien04.article

Poker Update

2008-02-20T13:44:00.000-06:00

I've been working hard on the Poker event. The designs for the invite, save the date, and envelopes went to the printer today. I have some concerns about them converting it from PC format to Mac format, but I'll figure out a Plan B if it comes to that. Invite should be going out to people in the mail late next week if all goes well.

I've also been gathering volunteers. This has been going well. I posted out on Craigslist and the response has been pleasantly surprised. I received a number of responses and even a few connections on auction items.

The committee is shooting to make this the biggest poker event yet. The Foundation's goal is $500k this year and the committee would love to see it be the first million dollar CFF event in Chicago. I think it's very possible.

http://www.CFHoldem.com

Wine Event and Museum Event Update

2008-02-20T13:36:00.000-06:00

Right now, Trisha is working with another CF mom on the Second Annual Museum Event at the Dupage Children's Museum. We ran it last year and it did very well for a local event, bringing in about $10k. It was a great event for parents and kids. This year, Trisha decided to hand over the event and move on to the Wine event. The Wine event has now been moved to late in the year to give it more planning and funding time.

The woman who took over the Museum event is doing a great job. She already has her funding in place, so anything she brings in now is going stright to the Foundation. It is scheduled for April 12, 2008 at the DuPage Children's Museum in Naperville on Washington.

Wine Event and Museum Event

2008-01-15T16:07:00.000-06:00

We have a couple of events that we are working on for the Naperville area. The first will be a wine event. We met a great guy about six months back who had a brother die of CF 55 years ago. We got him hooked into fundraising for CFF now. He started a letter writing campaign in his brother's name and brought in about $17k in the last month. Anyway, he is in the wine business and we decided to leverage that and have a wine tasting here in Naperville. Aside from the walk in June, Naperville is lacking in events for CFF. So, we are shooting for March on this. We are also bringing back the Night at the Museum at the Dupage Children's Museum. This was a great family night and we brought in a lot of money last year. Shoot me an email at chris at curecfnow.com if you can help out on either.

Email

2008-01-09T14:56:00.000-06:00

I like to have email that lets people know a little bit about me. I use the @CureCFNow.com. If you are interested in either the @CureCFNow.com or @IrishForACure.com, drop me an email at Chris at CureCFNow.com. I don't promote anything using it, I don't sell anything using it. The email is managed through Google, so I can't view it.

HGTV Design on a Dime

2008-01-09T14:52:00.000-06:00

This past summer, our family was featured on an episode of HGTV's Design on a Dime. They were looking to do a cause related show and they scouted both Chicago and LA for families related to different causes: vets, cancer related, etc. In the end, they picked Colin. It was a great experience. The designers, the camera guys, the producers all couldn't have been nicer. In the end, we had a great looking basement and we got CFF mentioned on national TV. Check out the pictures.

Horseshoe Casino's Casino Chicago

2008-01-08T08:10:00.000-06:00

I am currently working on a committee for the 2008 poker tournament. This is probably my favorite event because it has a big gala feel to it but it's still casual and a lot of fun. This will be our fourth year for the event. The first yeah was at a small place called Kaliediscopes in Chicago. We planned for 300 people and really hoped we'd get about 200. We sold out.

The entire event is very well run and very professional. We truck the tables with shuffles built in up from Vegas. After the second year, Horseshoe Casino in Hammond came on as the title sponsor and they have been nothing but fantastic to CFF. We ask for it and they deliver, and with a smile. Last year, they brought a busload of dealers, ice sculptures, and money.

So, this is the fourth year. We moved from our original spot in year one to the Sofitel on Rush in years two and three. We outgrew that fast last year and now we are on to the Marriott Downtown Michigan Avenue. It has a 800-900 person capacity if I recall. We will be adding a large amount of casino games to our poker tournament this year, so we may double the number of people. Plus, we are adding 100 seats to poker, bringing it up to 400 total. Check out all of the details at http://www.cfholdem.com

2006 Accenture Tri for CFF

2008-01-07T16:41:00.000-06:00

To Colin's Clan,

The Accenture Chicago Triathlon is coming up and a whole bunch of people are participating for me. My good friend Kevin Blake will be running his second triathlon for me, as will Uncle B and David Athens. My Uncle Mark and his neighbor Mick will be competing in their first Accenture Tri for me. My dad is going to be part of a relay team with another CF dad, Chris Horton, and the director of the Chicago CF office, Carolyn Cronin. They're all working really hard for this event, both by working out as well as fund raising. Please take a minute to read through all of this to see how you can help them help me.

My good friend, Kevin Blake, will be competing his second Accenture Chicago Triathlon on August 27th. He will be participating on a team for the Cystic Fibrosis Foundation (Team CF) and raising funds for cystic fibrosis research. Specifically, he's competing for me.

Please help me and other kids with CF by helping Kevin. Take a few minutes and visit his fundraising webpage. Please only donate if you feel obliged: http://www.active.com/donate/TeamCfTri06/kblake

On Friday (Aug. 25th), Kevin will be hosting a happy hour fund-raiser from 8-11pm at Kincade’s (950 West Armitage). Please stop in.

Also, Uncle Mark and his neighbor, Mick have pledged to raise $3000 for the Cystic Fibrosis Foundation in order to help fund the research working to find a cure for CF and along the way, extend the life expectancy of those that suffer with the disease.

There are two ways in which they are reaching out to help raise money for CF.

The first way is through our website at http://www.active.com/donate/TeamCfTri06/MickandMark. Just go there an enter how much you would like to donate and fill in the appropriate information. It's just that easy.

On Sunday, August 20th, Mark and Mick will host a CPR (CardioPulmonary Resuscitation) Class at Mark's house located at 12428 Country View Lane in Homer Glen, IL at 3pm. At this class, you will be instructed in the latest techniques on how to save someone's life that may be suffering a heart attack or respiratory arrest as specified by the American Heart Association. After attending this class, you will be issued an AHA CPR card, indicating that you are current and up-to-date on how to perform CPR. For some people in the health industry, this may be a requirement for their employment. For others, it's very useful to know. Mark and Mick will be offering the CPR class to anyone that is interested in exchange for a $25 donation to CF. Uncle B and Mom have held this type of class before as a way to raise funds for CF and they have been extremely successful.

If you are interested in the CPR class, please let Mark know by emailing him at Mark.Krizik@motorola.com so he knows how many participants to expect and how much training material he needs on hand.

Mick and Mark appreciate your support as they look forward to a mile swim, 20 mile bike ride and 6 mile run on August 27th. As they say in their website, it's 'a little effort for a big cause'.

Thank you,

Colin Walsh

(also Megan, Allison, Trisha, and Chris)
PLEASE PASS THIS ALONG TO FRIENDS.

Colin's Walk Letter from 2007

2008-01-07T14:40:00.000-06:00

To Colin's Clan,

Dear Family and Friends,

It's almost time for our annual walk for the Cystic Fibrosis Foundation on June, 16th. We got a huge head start on our fundraising this year with a very successful event at the DuPage Children's Museum. Thank you again to all who attended and donated.

Colin is now 4 years old and just finishing his first year of pre-school. He loves being outside, swimming, and riding in his jeep. Because of the CF, we have had a tough year trying to get Colin to gain weight, but we feel we are on the right track now. Trisha and I went to Washington DC in March for a national research update on CF. We received an update on the therapies in the pipeline and all of the work being done to find a cure! The time and money we are all providing is making a difference and we couldn't do it without help from all of you.

Once again, we will be walking at the Naperville Riverwalk on Saturday, June 16th. Registration is at 9:00 AM and the walk kicks off at 10:00 AM. It will be a great day with lots of food and fun! OR, if that is too early, we will holding our "Thank You" party at our house starting at 5:00 PM, with a lot more food, fun, and raffles! If you are coming out, we ask that you come for one or the other. Trying to do both is a long day.

So, come join us at either the walk or the party on June 16th. We can't wait to see you there.

Thank you so very much for helping find a cure for cystic fibrosis,

Chris, Trisha, Colin, Megan, and Allison Walsh
PLEASE PASS THIS ALONG TO FRIENDS.

CF Slideshow from 2007 Poker Tournament

2008-01-07T14:36:00.000-06:00

2007 CF Slideshow

Colin's CF Slideshow

2008-01-07T14:32:00.000-06:00

Colin's CF Slideshow on YouTube

Colin's Walk Letter from 2006

2008-01-07T14:16:00.000-06:00

Dear Aunts, Uncles, Grandmas, Grandpas, Neighbors, Friends, and Friends of Friends,

As most of you already know, my mom and dad are always trying to raise money for the Cystic Fibrosis Foundation to cure my CF. Dad says there are a lot of new drugs in development that are going to help me someday soon and that doctors and scientists are making great progress. Dad says progress is expensive and this is why we need your help.

I just turned three and this will be my 4th GREAT STRIDES walk in Naperville, can you believe that? All over the US in May and June, from Aunt Natalie’s house in Jersey to Uncle Kevin’s house in California, people are walking for GREAT STRIDES to help me and other kids with CF. GREAT STRIDES is the CFF’s largest and most successful national fund-raising event. This year, we will be walking in the Naperville GREAT STRIDES walk at the Riverwalk on June 10th. Please help me raise a lot of money so I don’t have to be sick any more, so I don’t have to do therapy every day, and so I don’t have to take pills every time I eat. Dad says we can raise $20,000.00 this year if we work hard. The money you give really helps me out. More than $.90 out of every dollar you contribute will be used to fund the vital research of the CF Foundation.

Colin’s Clan is making a very aggressive fundraising goal this year of $20,000.00. To reach this goal I need your help. When you receive this request, click the link below to donate, then please forward this email to 10 of your friends and ask them to donate to Colin’s Clan as well. Mom and Dad are going to send this to a minimum of 100 people. If they all forward it to 10 friends, that will be 1000 people. If we can do this all we need is $20 per person! Just think what we can do if we average $50 per person.

Making a donation is easy and secure! Just click the "Click to Donate" button on this page to make a donation. Any amount you can donate is greatly appreciated!

On June 10th, I’ll be at the Riverwalk at 9:00 AM. I hope you can come out and walk with me. If you can’t, please stop by our house later in the day for our walk party. Directions are on my Home Page linked below. Mom will send out details soon too. I know we can do it. You can make a difference in my life and the lives of those with CF! Thank you for supporting the CF Foundation and GREAT STRIDES!

Thank you,

Colin Walsh

Megan, Allison, Trisha, and Chris
PLEASE PASS THIS ALONG TO FRIENDS.

Colin's Walk Letter from 2005

2008-01-07T13:58:00.000-06:00

We’re coming up on our third Great Strides Walk for Cystic Fibrosis and the beginning of Colin’s third year of life with this disease. We pray for a better year and we really need your help to provide a better life for him, a life without this disease. You can't tell Colin has CF by looking at him and if I didn't tell you, it might be years before you knew. CF is a degenerative lung and digestive disease and over time, it will get worse until the lungs just fail. There currently is no cure. The disease is too small for pharmaceutical companies to invest time and money on. It’s not cancer, heart disease, or diabetes, but the end result is the same. We are the only way this disease is going to be cured. The money has to come from us. Some say that a cure is less than a decade away. Say you were a part of it.

People close to us who hear about Colin and other CF stories are realizing what a blessing it is to have healthy children. Colin will turn two on April 23. Unfortunately for him, he’s had a rougher two years and more time in the hospital than most kids will have in a lifetime. In just the past year, he’s made three trips to the hospital for bowel obstructions and stomach problems resulting from infections. He received a new mechanical chest percussor to vibrate out mucus built up in his lungs as the result of his winter infections. This is in addition to the two to three hours a day of treatments, chest therapy, and medications he already receives while other kids are out playing. We’re keeping our fingers crossed for a clean chest x-ray in May. The winter was long, he was on antibiotics four times. We were also told that he wasn’t gaining any weight and if he didn’t, we’ll be looking at a feeding tube in his future. With monthly shots to protect him against viruses and the numerous IVs he’s had, he’s completely afraid of his doctors.

Colin is an amazing little boy who couldn’t be happier when he’s feeling good. But when he’s sick, it’s like having a completely different child. Even after all he’s been through, he is the kindest, most thoughtful little boy you’ll ever meet. He’s always sharing and you can never just give him one piece of candy, he always needs one for his sisters as well. Hearing him say “thank you” will just melt your heart. He loves playing outside on his playset and with his trucks.

I know I have asked many of you before and guaranteed, I will ask you again. Colin and 30,000 other kids with CF really need your help.

Go to this site now and sign up to walk on June 25th. Even if you can't walk the distance or just aren't a big walker, come to the walk and cheer us on. It's a great time whether you walk or not. Either way, go to this site and sign up. (Or call us at 630-548-9634 and we’ll sign you up.)
http://www.cff.org/Great_Strides/find_a_walk_site/index.cfm
Select IL and then select Naperville, fill out your info, then select Colin's Clan as the team.

Please include “Colin’s Clan” in the memo of any checks.

If you are coming to the walk, you can bring donations with you. If you can’t make it to the walk, a donation can be made online at this site or let me know and I’ll pick it up from you.

Your cancelled check will serve as your receipt for a deduction on your taxes. Also, please make sure to ask your company if they provide matching funds. Many companies will match your donation to CFF by one, two, or even three times. It's "free" money going to a great cause. This isn’t technically a “walk-a-thon” or an event where you need to sponsor a walker. You are simply making a donation to CFF. This is an important point when talking to your HR department as many exclude “walk-a-thons” when matching a donation. And please, any amount is great and truly makes a difference.

If for some reason you just can't donate, you can still help Colin in two ways: pass this letter along to your friends and pray for Colin and every other child with CF. It's free and we can never get enough.

When we recently told our four year old we were going to a fundraiser to “find a cure” for CF, her reply was, “Where is the cure?” Someday soon, I’d like to be able to tell her we finally found it.

Finally, we want to offer a huge thanks to everyone who has donated their time, their money, and their support already this year. It's been a long year and we couldn't have done it without support. The Cystic Fibrosis Foundation has events all year long: golf, bowling, wine events, runs and walks, poker, you name it. Raising money will keep going until there’s a cure. Thank you for everything you have done for Colin and every other child with CF.

We look forward to seeing you registered for the walk and can't wait to see you. The entire day is a great time....DJ, snacks, lunch. After the walk, everyone is invited to our house (around 2:00 pm) for more food, drinks, music, and fun. We want all of you to come to Colin’s house and party. Please email us back to let us know how many will be attending for the food count. Also, if you are walking, let us know shirt size, we have new Colin’s Clan shirts.

PLEASE PASS THIS ALONG TO FRIENDS.

Chris, Trisha, Allison, Megan, and Colin
chris@curecfnow.com

A new CureCFNow/Colin's Clan

2008-01-07T11:44:00.000-06:00

I'm making the jump to a new format for CureCFNow and Colin's Clan. In the past, these were two separate things in two different places: Colin's Clan had it's own website that I primarily used to fundraise when the yearly walk rolled around. I'd spend too much time making new web pages and fitting them into the site. CureCFNow, for lack of a direction, was pointed at the Charit-a-Bowl website run by Mike Kolassa. With the new year, I thought I would try something a little different. So, I am combining the two website for now into one blog-based site that will deal mostly with fundraising for CFF. I am hoping this will make it a bit easier for me to post new events and new items as they come up instead of dreading having to put together a new page and then never getting around to posting it.

The first few posts here will be out of order. I am going to pull over the pages I had in Colin's Clan website and then retire that old site. So, the first few posts will actually be from years past.

Finally, they say that most blogs have a viewership of less than six people, including the author. Not sure if this will be different or not, but I hope it will.