andrew’s angels

So where’s our Great Strides info??

Ted Hardenburgh — Thu, 12 May 2011 11:21:58 -0700

Our local Great Strides walk is this weekend, and it will mark the first time since Andrew was diagnosed that we have not participated. This is due to Andrew's baseball schedule - his team plays their final game against a rival school Saturday morning and we learned from last year's walk that having him there for 20 minutes just wasn't what we want.

That said, we will be working on a different fund-raiser this year, we're trying to figure out exactly what that will be, but it will be something fun. Stay tuned for more info!

CF Surf Experience Day in Laguna Beach

Ted Hardenburgh — Fri, 6 Aug 2010 16:29:09 -0700

The Mauli Ola Foundation hosted a CF Surf Experience day on July 31 in Laguna Beach. Andrew went and spent the morning working on getting up on the board. He's getting the hang of it now and really enjoys it.

Surfing (and other ocean water activities) has been found to be beneficial to CF patients because the sea spray helps line the lungs to loosen up mucus. Because of this research in the last few years hypertonic saline therapy is available so patients can get a "surf session" at home via a nebulizer.

Here's a short video of Andrew's highlights from the day:

The Mauli Ola Foundation's purpose is to give CF Patients free surf experiences/lessons, many times with pro surfers, to encourage the patients to take up surfing on their own. And when there are enough volunteers, the siblings of CF patients get a turn, too. Thanks guys!

New drug released to help CF patients

Ted Hardenburgh — Thu, 15 Apr 2010 09:32:29 -0700

From the "This is what your donation does" department:

In February, the US FDA approved the drug Cayston as a treatment for cystic fibrosis. This drug was made possible by investment by the CF Foundation and its Therapeutics Development Program. Cayston is the first drug to advance from beginning to end through the program. The Therapeutics Development Program is designed to speed development of therapies for CF - therapies that may not have been otherwise worked on due to the relatively small patient population of CF.

For more information on CFF's role in the development and approval, please read the press release at the CFF website.

What is Cystic Fibrosis

Ted Hardenburgh — Tue, 13 Apr 2010 23:31:20 -0700

Found this animation on the CF Foundations YouTube page. It's very good, please watch it to understand the disease a little better.

2009 Great Strides Results

Ted Hardenburgh — Tue, 9 Jun 2009 07:16:55 -0700

Another great year for Andrew's Angels. We hit the $10,000 in money raised for this year's walk. Thanks to all who participated and walked with us, and especially to all our donors!

See you next year!

CBS News - Report on Cystic Fibrosis

Ted Hardenburgh — Thu, 5 Feb 2009 08:00:00 -0700

A story from late last year on Cystic Fibrosis, some information on what's going on and an amazing story of a man with CF running the NY Marathon.

Great Strides 2008 Recap

Ted Hardenburgh — Mon, 30 Jun 2008 09:09:29 -0700

The 2008 walk was a lighter walk for us compared to other years, for a variety of reasons related to the family and trying out a different request method. It was another banner year for the walk over ...

PacSun Pipeline to a Cure Event - July 19

Ted Hardenburgh — Tue, 19 Feb 2008 19:30:10 -0700

Coming this July 19, PacSun will be hosting a "black tie and flip-flop" event "Pipeline to a Cure" during the US Open of Surfing in Huntington Beach, CA. Please check out the video done by someone we know to help get the word out. And you might recognize someone at about the 1:25 mark in the video.

We'll post more information as we get it. It should be a very fun event with what should be a good turn out from the pro surfers competing that week.

CF "Breath of Fresh Air" Surf Day

Ted Hardenburgh — Wed, 23 May 2007 22:54:08 -0700

On Sunday, May 21, Andrew and eight other CF patients were part of the "Breath of Fresh Air" surf day sponsored by Ambry Genetics and Newport Surf Camp. Everyone arrived at the 28th Street jetty at 9am on an overcast day with surf that was a little less than what the organizers expected. But, since most of the kids (ages 8-24) hadn't surfed before, they didn't know and didn't care. Each of the CF patients was paired up with a pro surfer or one of the Newport Surf Camp instructors. Jamie O'Brien flew in from Hawaii to take part, and local pros Brad Ettinger and Cordell Miller were there as well.

The event's purpose was two-fold - to get CF patients involved in an activity that can help mitigate some of the effects of their disease, and as always bring some attention to CF and the search for a cure. I think those that helped out had as much fun as the CF patients, and it was very cool to see how the pro's brought many of their family along for the event.

Andrew had a great time, he surfed with Brad Ettinger, and they were the first in the water and the last out, as you can tell from the photos taken - he still had his wetsuit on well after everyone else had called it a morning. While he didn't get up on the board, it wasn't for a lack of effort.

Thanks again to Ambry Genetics, Newport Surf Camp, and West Surfing Products who donated wetsuits to all the participating CF patients. Watching the kids get into the wetsuit was pretty fun. And now it's an incentive to get back out on the water soon!

Surfline Photos are available online

Daily Pilot story:

Check out our photos on Flickr, they aren't quite like the photos from Surfline, but they're ours.

On May 20, Ambry Genetics and Newport Surf Camp sponsored a surf day for Cystic Fibrosis patients to help illustrate the impact of saline in helping CF patients maintain lung function and help fight infection.

West Surfing Products donated wet suits to all participants and pro surfers Jamie O'Brien, Brad Ettinger, and Cordell Miller along with instructors from Newport Surf Camp gave one-on-one instruction to the participants.

... See my Tabblo >

2007 Great Strides - The Results Show

Ted Hardenburgh — Thu, 17 May 2007 22:13:35 -0700

Well, the Dana Point walk is done and we've had a moment now to take a breath. 2007 was another successful year for Andrew's Angels! As of the walk day, our team raised nearly $16,000 dollars. Since the walk, we've received almost another $1,500, so this was a great year for the team. The Dana Point walk site totalled over $140,000, which is a record for the site. There were about 500 people that participated and over 10 teams that were part of the walk.

Thanks to everyone who walked with us and donated money to find a cure for CF.

Pictures are available now

PS - Caity's softball team got 2nd place in their division. In the morning semi-final game, Caity scored the winning run to send her team into the championship! It was a great day for everyone!

Andrew to participate in CF Surf Day

Ted Hardenburgh — Tue, 8 May 2007 08:03:44 -0700

Ambry Genetics is supporting the first ever Surf Day for CF with the Newport Beach Surf Camp on May 19. The idea comes from the discovery a couple of years ago that saline helps CF patients break up the mucus that forms in their lungs, helping to reduce infections, hospitalizations, and reducing the amount of damage done to the lungs. The discovery was initiated after a CF patient's relative noticed that when they went surfing, the patient always coughed up more mucus. The resulting research gave us hypertonic saline, a therapy that Andrew has been using for over a year now.

Andrew will be taking part to learn how to surf to help raise awareness of CF, and also because he really wants to learn how to surf.

More>>>

OC Register Article "Paddling for Life"

Ted Hardenburgh — Tue, 27 Mar 2007 07:49:15 -0700

In the March 27 issue of The OC Register, their Sports section has an article on a Costa Mesa man who paddles an outrigger canoe to help keep healthy. Your support of the CF Foundation helps to fund research that helps all CF patients live a long, healthy life.

Please take some time to read the article and donate today!

Great Strides 2007 - Register with our team!

Ted Hardenburgh — Thu, 8 Feb 2007 07:00:00 -0700

It is hard to believe that Great Strides 2007 is just around the corner. Saturday May 12,2007 is the date and Doheny State Beach is the place. Our team is registered, so please login to the Great Strides website and join our walk team. If you participated last year, just log in and all of your information will be there. Update anything you need to set your goal and you're off.

We are very excited about this year as the walk site grows this promises to help us reach our walk site goal of $150,000. Our team has always done so well and last year as you know we raised over $23,000 between Great Strides and the Onotria wine dinner auction.

We look forward to another great walk!

CFF Website Updated

Ted Hardenburgh — Thu, 2 Nov 2006 17:47:00 -0700

The Cystic Fibrosis Foundation's website has had a facelift. It's now easier to navigate and they've placed a lot of good information in a way that's easy to find. Check it out!

CFF Drug Pipeline Update

Ted Hardenburgh — Thu, 26 Oct 2006 08:03:00 -0700

The CF Foundation has recently updated the drug pipeline with new information. Please take a minute to see where your donations are going to work!

And as always, your donations are gratefully accepted using the link on the sidebar!

Dux in Tux

Ted Hardenburgh — Mon, 9 Oct 2006 20:15:13 -0700

Coming November 4, 2006 is the wonderful Dux in Tux event hosted by the Anaheim Ducks. Dux in Tux is an annual fund-raising dinner and auction where the players and coaches of the Anaheim Ducks trade their hockey sweaters in for tuxedos and act as your waiters during the dinner. It's a great event that is in it's seventh year and has raised lots of money towards finding a cure for CF. Andrew was an ambassador at this event a few years ago and had a wonderful time meeting the players and got his picture with a few of them.

If you're a hockey fan, go to this event! More info is at the Ducks' website.

Andrew update - September

Ted Hardenburgh — Fri, 29 Sep 2006 07:50:53 -0700

Andrew just completed his first round on the new TOBI delivery mechanism and had his check-up with the clinic. At first glance, everything seems to be going well with the tests. Andrew took a few days to get the process down, and not cough the TOBI out when taking it in, but after the first week, he seems to have gotten it down. At the clinic, they timed his delivery of a dose of TOBI at around 3 minutes, which is phenomenal compared to the 20 minutes it can take to complete a dose of nebulized TOBI.

Hopefully, the tests will confirm that he's getting the same amount of TOBI into his system and that it's helping with the pseudomonas.

Andrew update for August

Ted Hardenburgh — Fri, 11 Aug 2006 12:15:00 -0700

Andrew had his regular CF checkup at CHOC this week. Again, he's a very healthy kid, with or without CF. He's pushing 5'3", meaning he's "only 2 1/2" from being as tall as Chone Figgins!" Over 93 pounds, and his PFTs (Pulmonary function tests) increased over 10% on all but one test. The doctor's were very happy. Andrew's happy now because he's switched from the solutab formula of Prevacid to the capsule. He never liked having to wait for the thing to dissolve.

Another item, Andrew evidently qualifies to be a part of a study being done at CHOC on a new delivery mechanism for TOBI. He's going to go in for some tests to confirm his eligibility and then he'll be part of a 6 month study. We'll see how that goes and keep ya posted.

CF on GMA

Ted Hardenburgh — Thu, 3 Aug 2006 19:55:36 -0700

We don't watch GMA too much, but this was brought to our attention, so we thought we'd post it to highlight the progress that's been made. A 3 minute story was done on the August 2 edition of Good Morning America highlighting one woman's CF and that she's had a baby, something that usually causes a great deal of stress on the body of a CF patient, resulting in a worsening of the disease, but not in this case so far.

A couple of statistics that are important to note:

The current average lifespan of a CF patient is almost 37 years (we've reference this before)
Over 40% of CF patients are now over the age of 18. (Very good news, but will bring new issues to the table, but we're ready!)

Link to the print version

GS2006 Final Tally

Ted Hardenburgh — Wed, 12 Jul 2006 22:30:40 -0700

Now that we've had time to count everything, we had quite a few donations come in after the walk this year, we've got our final total. This year, we set a new team record of just under $24,000 raised for CF! This includes the wine auction and all funds from the walk. With that, we were the number one team in Orange County!

Thanks again to all who participated and donated. Your money will be well spent finding a cure and therapies for Cystic Fibrosis.

See you next year!