I was recently given an article that appeared in Pacific Coast magazine about the Mauli Ola Foundation. It was the title of the article that really caught my attention: "The Breath of Life" What?! That's what Avalyn's name means! The article went on, "For nearly a decade, the Mauli Ola Foundation has harnessed the power of the ocean to help kids with Cystic Fibrosis breathe easier"
(to read the full article from Pacific Coast magazine and to learn how the foundation was started, click here)
Immediately, I was entranced. After reading the article, I knew I just had to reach out to the foundation and they were more than happy to answer my questions!
The article in Pacific Coast magazine gave a lot of great information about the Foundation and how it was started. I'm sure as you are all aware, Cystic Fibrosis is often referred to as an 'orphan disease' because it affects fewer than 200,000 people. Add to that, the recommendation for CF patients to have limited to no contact with each other (for risk of spreading infections) and it can become very isolating. How do the surf experience days handle the groups of kids?
All volunteers, staff members, parents, and kids are given a safety brief before the Surf Experience Day starts. All participants MUST be 6ft or further from one another. Volunteers help distribute materials and food with gloves and the participants are not allowed to touch anything on the tables. We provide hand sanitizers as well. All participants wear a bright colored rash guard so we can keep the individuals separated and well taken care of. The boards are sanitized and wiped down before and after all use. We have a medical volunteer on site at every event.
Have you seen kids making new friends and connections at these events, where they otherwise wouldn't have the opportunity?
That is one of things we love about our events! Families and kids are able to connect with one another and meet fellow CFers and other kids with genetic conditions in their area. There are a lot of families that travel far, sometimes even from out of state, to join our Surf Experience Days. It's really awesome to be a bridge and opportunity for these amazing people to meet. I've noticed families bonding over their challenges and empowering one another by sharing some of their households best practices.
Surfing can be a little scary for people who breath normally. I'm sure there are parents who worry a little about sending their kids into the ocean! What is the age-range you guys accept at your SEDs? Do you have a limit to the number of kids that sign up?
We don't have an age limit. It is more up to the patient and parent and their comfort level. We have had kids as young as 2 sitting on the board riding in a wave with an athlete, up to our oldest participant who was over 60! Our average age is around 10-years-old. We try to keep our numbers 30 and lower for safety and as well as keeping the experience personal and family oriented.
If I wanted my daughter to attend an SED, what is the best/easiest way for me to find a schedule and sign up? Do you ever partner with local CF Foundation chapters on fundraising and events?
It is in the planning book to have local chapters all around the Nation so that we can continue to spread our mission in your neighborhood year round! The easiest way to keep up with our schedule is frequenting our website on our Surf Experience Day page at www.mauliola.org. We are also super active on social media and keep our folks updated on those mediums, too. (instagram/facebook: @mauliolafoundation)
I read in the PC magazine article that you guys are expanding to other countries! That must be so exciting for you. What are some of the new or maybe unexpected cities where your Surf Days take place?
We are super humbled and honored to take our mission outside our borders. This past year we were able to host our first International Surf Experience Days on Orewa Beach in Auckland in New Zealand. We also made way to Bells Beach in Australia on the Gold Coast.
Those of us who are familiar with the disease know how tough it is on our kiddos. One can imagine that a break from the daily medications and treatments is warmly welcomed by the children. These events give them a chance to forget about all that and just be a kid for a day- we can imagine how they are impacted by that! But tell me how some of the professional surfers have been affected by the kids? How do you get these busy surfers to sign up for your SEDs? Are they coming in with a general knowledge of the disease?
Again, we are so lucky to have such an amazing support group of individuals! Our Ohana seems to grow every year as more and more surfers get involved. Our ambassadors honestly are our biggest advocates. They help share our story and mission through their social channels and recruit other ambassadors by just giving their own personal experiences with the organization! Most ambassadors that join us have a prerequisite to some of these diseases as the knowledge is passed down from a current MOF Ambassador. They also learn a lot from individual patient, parent, and hospital staff member during events.
Did the founders ever think Mauli Ola would get this big? I'm sure they are driven by their belief in the power of the ocean and the healing benefits of salt water. Is there an impactful story that you could share or maybe a specific incident that you guys will always remember?
The Founders are two of the most humbled individuals we know! Because of their focused mindset and passion for understanding genetic conditions, finding answers, and providing solutions, it just naturally grew into what it is now. There are endless stories of impact, each unique to the patient, parents, staff member, volunteer, etc. When everything is all said and done, it is beautiful messages like this following one that we receive that make each Surf Experience Day and Hospital Visit special: "Every SED, I come home get cleaned up, sit down, look at the pics and my heart completely overflows with how much love, opportunities of hope and dreaming of BIGGER goals and my eyes get all watery...EVERYTIME! Their own grandparents don't celebrate them like Mauli Ola does. May God richly bless you all abundantly more than you have shown blessings to us!"
How lucky are our kids these days?! With foundations like Mauli Ola, we can really see the world opening up to children living with long-term diseases. As my good friend at the CF Foundation said to me once, "The CF community has room for all of us who want to make a difference"
Amen to that!