Why the Mauli Ola Foundation Is Helping CF Patients Surf
James and Charles Dunlop had already done plenty for the cystic fibrosis community as the founders of Ambry Genetics. Their diagnostics company was the first to do a full CF gene analysis that looked at the entire CFTR gene in 2001, which includes about 1,300 known mutations. The brothers took a more hands-on approach to helping CF patients years later by creating a surfing organization called the Mauli Ola Foundation.
The Dunlop brothers read an article in the New England Journal of Medicine, “A Controlled Trial of Long-Term Inhaled Hypertonic Saline in Patients with Cystic Fibrosis” in 2007. The study found that inhaling salt water vapor (hypertonic saline) is beneficial to CF lungs. The Australian study was inspired by CF patients reporting their lungs felt clearer after surfing and breathing in the fine sea mist kicked up by waves. This study led to the now-standard CF treatment of inhaling nebulized hypertonic saline.
Charles and James, both avid surfers, had connections in both the genetic disease community and surfing community. The opportunity to help CF patients could not be resisted. The brothers brought professional surfer James O’Brien and others to Newport Beach, CA to give a surfing lesson to CF patients. The Dunlop brothers decided to start the Mauli Ola Foundation in 2008 after media coverage of the event and positive feedback from both the surfing and CF communities.
“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,” James said. “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.”
“Mauli Ola” is Hawaiian for “Breath of Life.”
The foundation takes groups of CF patients out to beaches to teach them to surf at events dubbed Surf Experience Days. Patients keep 10 feet from each other at all times and the presence of professional surfers ensures patient safety. The surfers’ attendance has the bonus of bringing extra awareness to CF and the foundation — the roster includes world surfing champions and big wave legends.
“My brother and I are lifelong surfers and many of the professional surfers were friends of ours, so gaining support was pretty smooth,” James said. “When [big wave surfer] Kala Alexander and other big name surfers told their friends, the momentum of the surf community got behind our mission.”
The goal is for patients to find a love for surfing so they do it outside of Surf Experience Days, too. Breathing in the salt water vapors from crashing waves thins mucus and promotes productive coughing. This helps clear CF lungs of bacteria-harboring mucus. The foundation has been known to provide free surfboards as gifts for patients to promote surfing beyond their events.
Since the founding of the organization, there have been about 250 Surf Experience Days and over 2,500 participants all across the United States’ coasts. The surfers have even bought a tour bus to bring their mission to as many beaches and hospitals in the United States as possible. The foundation has also hosted events in other countries including Australia and New Zealand.
A Wave of Expansion
The Mauli Ola Foundation has held other events for CF awareness such as benefit concerts, surf contests, and golf tournaments. The members of the foundation, which now includes Mixed Martial Arts (MMA) fighters, regularly visit hospitalized patients — whether they have CF or not.
“The mission of the foundation has remained the same — ‘using natural treatments for people with genetic disorders’ — although we have expanded into numerous disease states, including cancers,” James said.
James left his position of CCO at Ambry Genetics after the company was sold this month (Charles is staying as CEO). James is using this change to funnel focus into strengthening the Mauli Ola Foundation through expansion to reach more patients.
“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.”
For more information, visit Mauli Ola Foundation’s website.
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