Testimonials

Bobby,

Erik had his quarterly check-up yesterday (1-7-10), and although there were some slight crackles in his lungs everything was great. His PFT's were the best he's EVER had!!! His weight has gone up and all in all he's a picture of health. I credit you, Mauli Ola, and  Ambry for the amazing surf days and getting him interested in the ocean more. His PFT's were so good that his primary care doctor heard from the CF team, and made it a point to call and congratulate us. He even said to keep up the surfing. It REALLY works!!!! THANK YOU THANK YOU THANK YOU!!!

Much love~Shar (1-07-2010, Hawaii)

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From the QuikSCience Program at USC campus
To increase awareness between the connection of the ocean and science.

~ A L O H A ~

Thank you all very much for making our event an enormous success!
The students really enjoyed speaking with you all and learning so much!
Our overall grade for the event was an A !! :)

We sincerely applaud your commitment and appreciate your time and dedication to
teaching the QuikSCinece students. Your passion for the ocean and all that is connected really shined through yesterday. You are awesome.
Have a wonderful Holiday,
Best, Terri

Terri Lynn Bidle
QuikSCience Program Manager (USC Campus, November 2009)

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Hi Bobby!  Thanks again for a wonderful surf experience for Jake. He had such a great time!  He was really excited too that he received his brand new wet suit. 

I was wondering if you have contact information to Todd.  He was so nice to give Jake a surfboard but unfortunately it would not fit in our car last Saturday so we were going to touch base this week.  I believe Jake has found a new sport, surfing, and he's excited to go out again.  Thanks again for thinking of Jake and giving him the experience that he probably would not have had. 

Blessings,
Yumi

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Hello,

I am a 39 year old surfer from Florida with CF. I have always believed that one of the keys to my personal longevity has been surfing and the ocean. It's wonderful what your foundation is doing. 

Mike 

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Blessings, Isa

Today, I have to share, has been one of the best days since my transplant- and you know I’ve had many! Thanks to the generosity of Ambry Genetics (they make a CF gene test) and Mauli Ola Foundation (means ‘breath of life’ in Hawaiian), a group of people with CF were invited to surf in Santa Cruz! As you may know, we grew up near Santa Monica, and my brother surfed since he was a young teen. Ana and I always dismissed the thought of surfing, so after transplant, it has been a goal of mine to try surfing. I thought I never could surf with CF lungs, because of low confidence due to breathing and energy limitations.

Well, today, I met my friends Tom, Rich, Emily and Kasey, among others, at Cowell Beach near the Wharf, for a few hours of Gidget! It was a gorgeous day, with temperatures in the Bay Area soaring to 90 in many parts. The sand was super hot, the sun beaming, the water refreshing. All of us with CF donned skin-tight wetsuits, showing off our CF bellies but grinning ear to ear with excitement. The beach was extremely crowded with visitors and surfers. Our beach was a site of many surf schools.

Today, there were several tents set up for people with ’special needs’. We saw blind people coming to surf on a shared board with an instructor. I saw a child with one leg surfing. I saw disabled children in sand-friendly/water-friendly wheelchairs. I saw burn patients surfing. All of a sudden CF seemed so mild and manageable compared to these other people, and I felt oddly spoiled with this indulgent gift of a free surf lesson just because of CF. I know CF is life-limiting, but we have all our senses and are mobile for the most part, and I suddenly didn’t feel deserving.

Each person with CF had an individual instructor from Richard Schmidt’s Surfing School. Mine was a guy named Barney, who was my age but still called my sister and I ‘girls’. He spoke with funny jargon like ‘dude’, ‘you’re dominating,’ or ‘cut the wave, man!’ and I had to smile, remembering my brother speak when he was a teenager. First, we paddled out to where the waves were breaking.

After one minute, my arms were burning. Damn prednisone! But I looked over and saw Rich, who has half my lung capacity, doing the same, so I dregged on. I manuevered the board and waited for the waves. When the wave approaches, I had to paddle like crazy and then feel the push of the wave (plus Barney’s supplemental turbo push), and then in one swoop stand up. Easy, right?

Surfing is primarily trial and error. I have terrible balance from Prograf but after Barney gave me the humungous 10 foot board (1.5 ft wide), I managed to stand for several seconds before falling. This was a great accomplishment! The waves were pathetically tiny- 1 or 2 feet only. I would often try to stand, tip the board, and crash in the water. Or I’d start to stand and then see someone directly in my way, and crash. Or I’d pause and get up on my knees and loose balance and tip over. Once my hand slipped when I tried to stand and I just fell right in; surfing is truly a humbling experience.

The CFers were coughing in the distance and hopefully salt water will kill the germs. I did take one big gulp of water, though… hopefully my immune system will be ok. The water wasn’t too deep so I could walk on the sandy floor after I crashed in the water. My arms, chest and neck got a great workout! I was so proud that by the end of the 1.5 hours, I could stand enough to turn the board right and ride along the wave! This is true exhiliration!

I felt so fully alive today. To fulfill a goal, that randomly comes one’s way, especially a goal involving healthy activity, is truly satisfying. All the surf instructors and the Ambry/Maoli Ola volunteers were so incredibly kind. I definitely want to do this again! If you have CF and are interested in other events in different locations, check out the www.mauliola.org website.

After surfing, we went out to lunch with our CF friends. The greatest celebration today was spending time with Emily, Ambry’s patient representative, who happens to be our former CF camper from Southern California CF camp way back from 1992- 1996. She is now 26, looks gorgeous, and surfs regularly as therapy. I never would have imagined that 13 years after the last So Cal CF camp, we’d be in wetsuits together, alive and well, in sunny Santa Cruz, SURFING! Fate presents amazing surprises.

I am sure I won’t be able to lift my arms tomorrow:). Thank you for reading this entry. I wish you warm sun and healthy activity this May.

Blessings, Isa

Santa Monica Surf Experience Day May 16th, 2009

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Bobby

What an AWESOME event. Our girls had *so* much fun. What a phenomenal crew Volcom has. The spirit, passion, and commitment of these guys to helping our kids have fun is amazing. And Gavin, in particular--his patience in surfing FOREVER with Ellie (she's still smiling--can't wipe the silly grin off of her face) was so appreciated.

I so appreciate all that you guys do to get the word out and help our kids have fun in the here and now. I know Kurt is working on getting addresses from James so we can send "real" thank yous to folks--that's important to us so that our girls learn the importance of giving thanks and so that your folks understand the real impact they're making, one kid (well, two, at this household :)) at a time.

Thanks so much! We love this organization--we've finally found something *good* about having CF--this wonderful community of support you've created! Thanks.

--britta (Newport Beach 2009)

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Dear Bobby,

Thank you so much for surf day. Max had a great time and has already been back out on his own trying to practice what he learned. Chad helped him gain some confidence. Thank you for being kind to the kids and just a really great guy.

Aloha,

Pam Heilman (Newport Beach 2009)

Thanks

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