Whether you’re an author or a reader, you can help. The idea is simple. You can work alone or with a team to set a writing or reading goal for the month of September 2008. As much as I'd love to participate by reading a certain number of pages, I have elected instead to write 20,000 words. I will be posting updates on my progress throughout the month so stay tuned.

Debbie Macomber is the pacesetting author who has set her own goal to write 30,000 words. 

The Cystic Fibrosis Foundation website will keep track of participants, teams and donations. Just click on the Unleash Your Story bumper sticker to participate or donate.

BTW I'm also looking for sponsers, so if you would like to sponser me and make a donation let me know.

The event, which will be held from 4-8 p.m., at the scenic horse farm, Diamond Ranch on Mecox Road in Bridge hampton, will offer fun and entertainment for one and all,including cocktails, a delicious barbecue by Fresh Flavors, live music by the Annie Morgan Band, a silent auction and games and activities for kids of all ages with prizes, organized and led by camp counselors through the generosity of Hampton Country Day Camp.Glacier, the official vodka of Breath of the Hamptons, will host a martini bar, and Glaceau will provide Vitamin Water for the event.Breath of the Hamptons is presented by The Jeffrey A. Altman Foundation, Owl Creek Asset Management & Keith and Laura Barket and Angelo, Gordon & Co.

• Date:
  07/19/2008
• Time: 04:00 pm - 08:00 pm
• Where: Diamond Ranch
  600 Mecox Road
  Bridgehampton, NY
• Website: http://www.breathofthehamptons.org/

Happy May! Congress has officially named MAY Cystic Fibrosis Awareness month. Yippee!!
So this month maybe you can do one of more of these things:

* Send out a mass email sending people to this site to show them what life is like for someone with Cystic Fibrosis.

* Participate in the national Great Strides walks happening in your area (www.cff.org/greatstrides for more info). [Note: The Cystic Fibrosis Foundation (CFF) is a GREAT source of large scale funding for research and education of Cystic Fibrosis]

* Buy a Salty and Sweet t-shirt, wear it every day this month with pride and if someone asks about it tell them about CF... you can wash it if you'd like... :)

* Tell someone with CF that you love them!!

Let's hope so!

There's been a lot of buzz about the promise of this exciting drug to enter the realm of cystic fibrosis treatments. As it enters its second Phase III trial, the excitement is palpable. Will this change the future of the cystic fibrosis in our youngest population, potentially staving off the effects of lung damage by helping to prevent it in the first place? While the future of denufosol remains unclear for the moment, the long term implications of potentially finding such a drug is giving hope to thousands.  Another reference here.

This news burst follows closely on the heels of another major advancement for those with cystic fibrosis who have what is known as nonsense mutation (approximately 10% of the CF population).  A drug known as PTC124 continues to show promise for these patients as well as some patients with a certain form of Muscular Dystrophy.

In hopes of continuing the momentum and helping to find a cure, I have once again activated my team, Ally's Allies,  to join the Cystic Fibrosis Foundation's Great Strides fundraiser.  Join my team, form a team of your own, or simply donate.  Your support makes the difference for these and other drugs to be discovered and used to help save lives... thank you for your help!

NEWPORT BEACH, Calif. – Surfing has a unique relationship with cystic fibrosis, the number one genetic killer among kids in the US. Children with CF have what is similar to a chronic, severe chest cold and sinus problems. After reports of CF sufferers feeling better after surfing, medical researchers looked into what turned to be a new medical treatment for CF called hypertonic saline therapy. This treatment basically mimics exposure to salty air. Surfing, a natural way to get salt and moisture in the lungs, helps prolong and improve the quality of life for those with this life-shortening disease.

Newport Surf Camp, Cordell Miller Surfboards, and Ambry Genetics have teamed up with the Cystic Fibrosis Foundation to provide free surf clinics for children with CF, and to spread the word about this natural and fun way to combine exercise and relief from CF-related respiratory symptoms. The next surf clinic will be held Saturday, September 8th, at the 28th Street Jetty in Newport Beach from 5-7 p.m.

This connection to surfing was discovered last year, at a children’s hospital on the coast of Australia, where several CF kids were coming in for routine check-ups. During the visit, physicians noticed that their lung function, or their ability to take in more air during breathing, showed marked improvement. What researchers later found out was that these kids were going out to surf before they came in for their visit to the hospital. Researchers later made the connection that the exposure to the salty air aids in improving overall lung health for CF sufferers.

James Dunlop from Ambry Genetics explains, “Every time a child with CF gets in the water, it helps clear out their nasal passages and airway. That cuts down on infections, hospitalizations, and slows down the rate of permanent lung damage, potentially increasing overall lifespan and health. We want to take this great new treatment back to its roots, by getting the kids with CF into the water and surfing.” Todd Elder of Newport Surf Camp added, "Surfing has always been good for the soul, so there is this emotional therapy side for the CF kids. But to share surfing with these kids and at the same time know that it is helping them physically, is incredible."

Cystic Fibrosis is a life-shortening genetic disease affecting about 30,000 people in the U.S. The life expectancy of CF patients has risen dramatically in the last two decades from about 18 years of age to about 37 with modern drug therapies. It is through the support of the Cystic Fibrosis Foundation and their drug pipeline that has provided many more years to the CF population. Please contact your local CF office to see how you can help change CF to Cure Found.

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About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is a donor-supported, nonprofit organization committed to finding therapies and ultimately a cure for cystic fibrosis, and to improving the lives of those with the disease. For more information, visit www.cff.org.

Contact:

CASEY CASTON, Southern California Director of Special Events
Southern California Chapter, Cystic Fibrosis Foundation

Phone: (714) 938-1393

E-mail: ccaston@cff.org