2008 Naperville Great Strides Walk

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:

 

 

 

Colin’s Clan – Great Strides Clay County Florida

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

Local School Hung Up over Fundraising

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.

more about "2008 HCMS New", posted with vodpod

Fund Raising Dos and Don’ts

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

Update on Poker, Museum, Walks, Wine

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. 

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.

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

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

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

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

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

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.