Happy Scoliosis Awareness Month… Again!
This is Part 53 of a serial blog originally titled 'Martha Carter's Healing Journey'. Curious about the earlier posts? To start from the beginning, read Part 1.
***
(… we know that OUR scoliosis awareness lasts all year!)
Another year around the sun, and another Scoliosis Awareness Month! I can hardly believe that June is here already, and it’s once again time to discuss different aspects of living with scoliosis while celebrating the incredible resilience displayed by each and every person living with this confounding condition.
With that in mind, this month I am touching base on a few different scoliosis-related topics, starting with the ‘herstory’ of Scoliosis Awareness Month, as well as bringing attention to our growing playlist of Fusion Forums on our YouTube channel, and sharing about a new TOPS back care retreat in Mexico happening in November.
A BIT of HERSTORY
… about Scoliosis Awareness Month, the National Scoliosis Foundation, the Scoliosis Research Society, and SOSORT.
Scoliosis Awareness Month takes place every June, and June 26th is widely observed as Scoliosis Awareness Day. This global awareness campaign highlights the importance of early detection, public education, and non-operative treatments like bracing and physical therapy. It also aims to unite patients, families, and clinicians to advocate for better spinal care.
I had never researched its origins before, but it turns out that this yearly observance was established in 2008 by the National Scoliosis Foundation (NSF), which secured the first official public proclamation from the U.S. House of Representatives designating June as the observance month.
It turns out this all happened thanks to the Honorable Allyson Y. Schwartz, U.S. Representative from Pennsylvania, who served from 2005-2015. Ms. Schwartz was the only woman in her delegation for most of her five terms in the House, and she thankfully used her extensive political and community experience, in addition to her spot on the influential Ways and Means Committee, to pursue health care reform, including bringing attention to scoliosis. Thank you, Allyson Schwartz! (Note: nowhere in my research does it indicate that she has the condition herself, so I wonder what or who prompted her to take this on!)
Another important organization, the Milwaukee-based Scoliosis Research Society (SRS), was founded in 1966 as the premier international society dedicated to fostering optimal care for all patients with spinal deformities. In 2009, the SRS partnered with the NSF to build a unified national June awareness campaign, which has since expanded across schools, clinics, and hospitals. International groups like the Society on Scoliosis Orthopaedic and Rehabilitation Treatment (SOSORT) have also joined the cause to help expand the campaign globally.
Please note that the NSF and SRS are both U.S.- based organizations. Scoliosis organizations in Canada are less developed, but the Canadian Scoliosis Screening Coalition has a website with several related listings across the country including the Canadian Scoliosis and the Scoliosis Support Group facebook pages. If you live elsewhere, I suggest you do an online search to help you find scoliosis groups in your area.
SOSORT—the Society on Scoliosis Orthopaedic and Rehabilitation Treatment—is slightly different, as it is a global non-profit organization founded in 2004 by a group of physicians from Europe and Asia. SOSORT is best known for its yearly congresses dedicated to shining a light on the non-surgical (conservative) management of scoliosis and other structural spinal changes. In fact, the society was specifically created to establish scientific standards for treatments that aim to avoid surgery.
SOSORT is hosted in a different city each year, and it turns out that the next event, called SPINE WEEK 2027, will be hosted in Montréal, Canada, from May 16–20, 2027. I have never been to one, but I am definitely planning to attend next year in Montréal.
Does anyone want to join me?
FUSION FORUM #4
Speaking of awareness, over the last two years, TOPS has been bringing attention to the challenges of living with spinal fusion due to scoliosis by creating and producing four FUSION Forums, which can be attended on Zoom in real time, or the recording can be viewed later on YouTube.
Each forum features three ‘fusioneers’ who share their very personal and engaging stories of trying to function ‘normally’ every day while living with a very NOT-normal spine.
To paraphrase my introduction at the beginning of our most recent forum about pregnancy and motherhood…
“The big question is who really knows? Who can we really talk to about all of our questions?
What movement is safe? What sports? What about yoga? Or just everyday life—lifting groceries, doing chores, picking up a child?
Each of us has to find that delicate balance between what we love… and what our body will actually tolerate.
And that’s exactly why these Fusion Forums exist.
They are a forum for sharing lived experience—for the kind of knowledge you don’t usually find in medical journals. We share stories and strategies, and we make these conversations public so that someone, somewhere, who is searching late at night for answers, doesn’t feel quite so alone.
Because, despite the fact that millions of people worldwide are living with spinal fusions, there is still very little practical guidance on how to live well with them—day to day, year to year, body to body.”
I am very proud of these forums because they are sharing crucial information that is otherwise hard to find anywhere else. I often think about how there are a shockingly small amount of resources out there to help people with their fusions as they get older, and that is the point. Check out these forums to hear heartfelt, experience-based stories that paint an extremely insightful picture of what it takes to manage spinal fusion, along with a myriad of other discussions around the subject.
To date, TOPS has created FOUR forums with the following themes:
Adolescent Surgery and Aging with Fusion
Going through Surgery Later in Life
Complex Reality of having a Revision Surgery (or more)
Pregnancy, Childbirth, and Motherhood with a Fused Spine
I encourage you to watch them on our TOPS YouTube channel HERE.
BACK IN BALANCE on the BEACH (BIBOB) in Mexico
November 7–14, 2026
Yoga, somatics, physio, breathwork — nature, sunsets, whales, and delicious meals!
… And speaking of community and experience-based stories, are you busy in November?
That is when Claudia Katherine, the lovely ‘scoliosis coach’, and I will be taking our annual backcare retreat to Mexico, where we will share our unique and collaborative approach to help you get “back in balance” — with the help of warm air, salty waters, stunning nature, and delicious food in Troncones, Mexico.
Over the years, while attending and teaching retreats in this lovely, quiet pueblo, I have noticed how incredibly beneficial it is to take time out for focused self-care. Clearly, vacations are important for everyone, but choosing to combine time away with daily bodywork — in a hot, beautiful place immersed in nature — takes it all to another level. I know I am biased, but I truly consider it an amazing gift to ourselves to invest in this kind of experience.
First of all, the whole setup is fantastic.
Guests stay at a lovely family-run beachfront hotel just a short walk from the Casa Verde yoga studio where our classes are held. And when I say short walk, I mean an exhilarating beach walk around a windswept point populated by tiny hermit crabs, endless shells, squadrons of pelicans, and ambitious surfers.
From my home in Canada, I often think about that “walk around the point” and can hardly wait to be there again to feel my feet in the sand and the warm wind on my body as I turn the corner and see the endless ocean view. It is one of my greatest pleasures to experience it each day during the retreat.
And then there is the incredible open-air yoga platform where we hold our classes. Built above a scenic rocky beach, the sound of the waves becomes a rhythmic backdrop to our breath. From there, we can watch fishing boats trolling offshore — and very possibly catching our dinner — while whales breach and lobtail in the distance.
Under the studio is another favourite destination: a swinging bed offering the same breathtaking views, along with the bonus of being an extremely comfortable spot for reading a book, having a nap, or simply enjoying the lulling swing while awaiting one of the massage treatments we can arrange for anyone interested.
Meals are another pleasure story.
Troncones is known as a bit of a foodie town. Alongside many traditional specialties, trained chefs have opened restaurants that blend Mexican and international cuisine, making the most of the fresh seafood, tropical fruits and vegetables, and local spices.
Guests are served an early breakfast and a post-class brunch at the hotel, and we also enjoy a few dinners there, as it offers one of the best sunset views in town. But we also explore other local spots.
One of my favourites gives itself away in its name: Un Pedacito de Cielo, which translates to “a little piece of heaven.” Just like the walk around the point, I dream about returning to this rustic open-air seaside eatery with its fresh tuna of the day seared with sesame seeds, or their unique tuna tartare with mango and avocado. My stomach is rumbling just thinking about it.
I could go on describing how the classes will help you better align and strengthen your back, especially if you are dealing with asymmetry, scoliosis, kyphosis, or spinal fusion. I could talk about how the week brings relaxation and rejuvenation while helping you gain deeper knowledge, wisdom, and awareness of yourself.
I could also mention the many optional activities, including nature excursions, shopping, swimming, boogie boarding, surfing, sunset cocktail hour, and the all-important siestas.
But really, there is only one question you need to answer:
Are you interested in deeply connecting with your body in a beautiful place?
If so, I encourage you to come and experience it all for yourself.
What better way to celebrate scoliosis, your own resilience, and the best things that life has to offer?
A couple of testimonials from last year’s ‘Back In Balance’ retreat sum it up well:
“Martha and Claudia make a great team, providing individual and collaborative information to the workshop based on their own lived experiences as well as expertise in yoga, pilates and somatics with a special focus on scoliosis and fusion. I had never heard of this kind of workshop before and I am forever grateful that I attended it. I learned so much! And I loved meeting all the other twisted sisters!”
“The whole retreat was a delight and pleasure in so many ways. It was especially eye-opening for me to realize that there are a lot of simple exercises that I can do that really help to calm the pain in my back. Happily, the repetitive inhale breathing exercise resonated with my stuck ribs so they tingle now - a happy tingle - when I breathe in and inflate my ribcage - yeah!”
Wishing all of our twisty community a fantastic Scoliosis Awareness Month! And, as always, if any questions or thoughts, reach out to us at TOPS here — we’re always happy to hear from you.
***
Interested in receiving our monthly newsletter? Subscribe here.
Got comments? Please feel free to write us anytime.