Came across this today and thought it had some good ideas.
The Give List
Catching Up after a successful Wine Event
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.
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more about "2008 Uncork A Cure Wine Event", posted with vodpod
Thank You!
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.
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.
Inhaled Drug Devices
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]
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.
[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
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
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
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
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
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
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.
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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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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.
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.
[vodpod id=ExternalVideo.604784&w=425&h=350&fv=host%3Dpicasaweb.google.com%26captions%3D1%26noautoplay%3D1%26RGB%3D0x000000%26feed%3Dhttp%253A%252F%252Fpicasaweb.google.com%252Fdata%252Ffeed%252Fapi%252Fuser%252Fcfholdem%252Falbumid%252F5192178587207055313%253Fkind%253Dphoto%2526alt%253Drss]
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.
[vodpod id=ExternalVideo.604699&w=425&h=350&fv=host%3Dpicasaweb.google.com%26captions%3D1%26noautoplay%3D1%26RGB%3D0x000000%26feed%3Dhttp%253A%252F%252Fpicasaweb.google.com%252Fdata%252Ffeed%252Fapi%252Fuser%252Fwalsh.family.curecfnow%252Falbumid%252F5212569530398019681%253Fkind%253Dphoto%2526alt%253Drss]
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.
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://www.cff.org/aboutCFFoundation/PressRoom/2008PressReleases/index.cfm?ID=8475&blnShowBack=False&idContentType=3617&IDCT=3617
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
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
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.
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.
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
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
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.
2006 Accenture Tri for CFF
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.
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.
Colin's Walk Letter from 2007
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.
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's Walk Letter from 2006
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.
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.
Colin's Walk Letter from 2005
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.
A new CureCFNow/Colin's Clan
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.
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.
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