Kids with Cystic Fibrosis Given a “Breath of Life”
Discovering the benefits of salt water for patients affected by cystic fibrosis - and embracing them.
Photo: Jackie Connor/Mauliola.org
In 1999, Charles Dunlop founded Ambry Genetics because he wanted to work for an organization dedicated to restoring the balance between open science and commercial interests. An organization driven by scientists, genetic counselors, and physicians whose mission would be to put an end to disease and to provide high quality service. Charles realized this mission by launching one of the healthcare industry’s most useful diagnostic tests - the CFTR full gene test with a 99% detection rate.
In 2007, Charles and his brother, James Dunlop, read an article in the New England Journal of Medicine about how ocean water provides natural therapy for individuals with CF. The Australian study found that inhaling salt water vapor is beneficial to the lungs affected by CF. Additionally, the patients involved in the study reported their lungs felt clearer after surfing and breathing in the mist from the sea.
Later that year, the brothers organized an event at Newport Beach, where children with CF joined pro surfer, Jamie O'Brien, for one-on-one surf lessons. The company ‘Surfline’ posted an article about the event, which received a huge response from the surf community.
Having dedicated their lives to working with CF at Ambry Genetics and surfing in their spare time, Charles and James decided immediately to blend their professional and personal passions to create the Mauli Ola Foundation (MOF). “When we started taking patients with CF surfing as a natural way to get a hypertonic saline treatment in 2007, we didn’t anticipate we would eventually start an actual foundation. When we saw the positive response from the CF community, we knew we had to continue the efforts. That first surf day was the moment we knew it was bigger than just a surf day” said James.
* “Mauli Ola” is a Hawaiian expression for “breath of life”
Riding waves and putting smiles on children’s faces
MOF is a nonprofit organization that is dedicated to providing hope and confidence to individuals living with genetic disorders, such as CF, by taking advantage of the healing qualities of the ocean. “In the hospital, CF patients do something called hypersonic saline treatments, where they breathe in warm salt air while at the same time wearing a vest that bangs on their backs to discharge the mucus (from their lungs). Going in the ocean is the natural equivalent of that treatment. Essentially, the salt brings up the mucus so they can get it out of their lungs and breathe easier” said James.
Charles and James introduced surfing and ocean based activities as natural therapies to help children with CF to breath more easily and to have fun at the same time. Through word of mouth, they were able to connect the top water men and women from across the globe to meet with children in need.
Now, every year, MOF organizes a tour across the nation to promote education and to raise awareness on genetic disorders, as well as to heighten research in the clinical field. The annual tour includes awareness events, visits to pediatric hospitals, and Surf Experience Days (SED). The foundation also sends its world class surfing ambassadors nationwide to serve as hosts for the SEDs. During these days, pediatric patients with CF are brought to the ocean with professional surfers, combining treatment and fun. Patients are kept 10 feet from one another at all times and the presence of the professionals ensures patient safety. “My brother and I are lifelong surfers and many of the professional surfers were friends of ours, so gaining support was pretty smooth. When [big wave surfer] Kala Alexander and other big name surfers told their friends, the momentum of the surf community got behind our mission” said James.
The 2018 tour was kicked off in May in honor of Cystic Fibrosis Awareness Month. Upcoming events include Malibu SED on November 10th and Haleiwa SED on December 1st (the end date of the tour). “What makes MOF so amazing is that it not only grants an opportunity for kids to get active, have fun, and build their confidence, but it also introduces the ocean as a natural form of therapy. Hypertonic saline is a treatment for people with Cystic Fibrosis, and the best source for it, for people who are healthy enough is the ocean! Sometimes kids can even skip a treatment that day after being in the ocean” said Christy Moore, Product Manager for Pediatrics at Ambry Genetics and contributor at MOF.
For some of the children's’ families, the surfing experience has done more than change their weekend plans. It has changed their lives. In fact, some have moved to the coast just so that their children can continue with surf therapy. “To see some of these families change their whole life and base them around the ocean is great. It’s awesome to see the kids become more avid surfers, laughing, smiling, and having something to look forward to like surfing that also helps them breathe better” said Kala Alexander, professional waterman and big wave surfer.
Raising awareness on a whole new level
MOF raises funds to support its program through social events such as sports tournaments, benefit concerts, galas, and other events.
Since its founding, the foundation has grown to include children and hospitals in Hawaii, the Gulf of Mexico, as well as the Pacific and Atlantic coastlines. There have been over 250 SEDs with over 2,500 participants from across the coasts of the United States. MOF has also hosted surf events in other countries across the globe, such as Australia and New Zealand. “It’s amazing to witness what riding a wave can do for the human spirit, but hearing the consistent testimonials from the families about lung function improvement — now that’s a miracle,” said Hans Hagen, Executive Director of MOF.
While the mission of the foundation has remained the same – “may the wave heal us all” - MOF has expanded into numerous disease states, including cancers.
James has left his position of CCO at Ambry Genetics (Charlie remains on as CEO) and is using this change to remain focused on reaching more patients through the expansion of MOF. “I believe [expanding more into] Australia and Europe where there is a relatively high per capita CF population and access to the ocean would be ideal. But really anywhere we could hold events like Brazil and other places in South America would be amazing” he said.
References:
1.http://www.mauliola.org/blog/view-post/17/torquay-s-first-surf-experience-day
2.https://www.ambrygen.com/about/our-story
4.http://confessionsofasurfergirl.com/mauli-ola-friends-hold-surf-experience-day-torquay-beach/
5.https://www.surfer.com/surfer-poll-features/mauliolafoundation/
8.https://cysticfibrosisnewstoday.com/2018/03/01/mauli-ola-foundation-helping-cf-patients-surf/
9.https://www.ocregister.com/2015/10/30/mauli-ola-foundation-a-breath-of-fresh-air/
