andrew’s angels

Andrew is 18 today!

Ted Hardenburgh — Mon, 19 Nov 2012 16:08:02 -0700

Happy 18th Birthday Andrew!

Eighteen years ago today, we were blessed with the wonderful gift of our son Andrew. Shortly before Andrew turned five, we learned that he had a life-threatening disease called Cystic Fibrosis(CF). Since learning of Andrew's illness our family and friends have supported us not only emotionally, but through their generous support of the Cystic Fibrosis Foundation. The CF Foundation is leading the way to finding a cure for this disease that effects about 30,000 children and adults in the United States.

The CF Foundation, with their partnership with Vertex Pharmaceuticals, has discovered a new class of drugs that attack the basic defect of CF and not just the symptoms.

One of these drugs, Kalydeco, has already been proven to be effective for about 4% of the CF population, to the point that these CF patients have made miraculous improvement.

Another one of these drugs is entering Phase 3 clinical trials and may have the same effect for 80% of CF patients, including Andrew.

The cure is closer than ever, and the science is there! All we need now is money to push these drugs through the pipeline so Andrew and everyone suffering from CF can live healthy and fulfilled lives.

Once again, we are asking for your continued support in our fight against Cystic Fibrosis.

Please consider marking Andrew's 18th birthday with a gift that will ensure he can continue to blow out candles for many more birthdays. Please click here to donate online or mail a check made out to the Cystic Fibrosis Foundation or CFF to Dana Hardenburgh, 33 Colorido, Rancho Santa Margarita, CA 92688. Any contribution you make is greatly appreciated and 90 cents of every dollar raised is used for program services.

Thank you for continuing to help us make a difference in Andrew’s life as well as all who are affected by CF.

2012 Partners in Progress Fund

Ted Hardenburgh — Thu, 26 Jul 2012 12:30:45 -0700

As many of you know I have Cystic Fibrosis which is commonly known as CF. CF is a life-threatening disease that affects approximately 30,000 children and adults here in the United States. I am currently doing very well. I was diagnosed at the age of 4 1/2, which is when we started our involvement with the Cystic Fibrosis Foundation. I will be a senior this year at Santa Margarita Catholic High School. I play on the Varsity baseball team and am the co-president of the Cystic Fibrosis/Make a Wish Club, a Link Crew leader, and an Ambassador for my school. Even though it sounds like I am not affected by this disease, I am. I have to wake up early every morning before school to do treatments, make quarterly visits to my doctors at the CHOC clinic as well as see a specialist for my sinuses. I have to take about 20 or more enzymes a day along with other pills that help keep me healthy. Even with all this I continue to fight and do my part to find a cure.

In recent years it has become harder for me to participate in the annual Great Strides Walk at Doheny State Beach due to sports schedules and other commitments. This year we are participating in the CFF Partners in Progress Fund. Your donation will allow research to continue and go further in finding a cure for CF. Currently, money that has already been raised by the Cystic Fibrosis Foundation has gone towards a drug that will help open new windows in finding a cure as well as work with a certain mutation of the Cystic Fibrosis gene. Another drug currently in testing will help me and other CF patients that share the same mutation. It was recently announced that a Phase III trial will start next year, this is the last step before possibly making the therapy generally available. The cure is closer than ever, with the science so close! Your donation will help find a cure for me and many others with CF.

To donate the the Partners in Progress Fund, please visit my fund page and click the Donate button. A link can also be found here on the site. If you would prefer sending a check, please click the Contact link at the top of the page to see our email address so we can get you a mailing address.

Thank you for continuing to help make a difference in both my life and others who have been affected by CF.

Andrew

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.