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Entries categorized as ‘cystic fibrosis’

Be a part of our walk team!

May 28, 2009 · Leave a Comment

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

Categories: Events · cystic fibrosis · great strides

Presentation at Nektar

July 1, 2008 · Leave a Comment

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.

Categories: cystic fibrosis
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2008 Naperville Great Strides Walk

June 16, 2008 · Leave a Comment

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:

 

 

 

Categories: Events · Video · cystic fibrosis · great strides

Colin’s Clan – Great Strides Clay County Florida

June 16, 2008 · Leave a Comment

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!!!

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

Categories: Events · cystic fibrosis · great strides
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Huge day for cystic fibrosis

March 27, 2008 · 2 Comments

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.

Categories: CFF · Media · cystic fibrosis
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Sometimes it’s close to home

March 4, 2008 · Leave a Comment

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

Categories: Media · cystic fibrosis