Andrew is 18 today!

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

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??

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

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

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.