‘Let’s Get Loud for A.S.’: Montrealer raises awareness for ankylosing spondylitis

“Not let the disease define me,” said Michael Santillo, about the inspiration behind his fundraising gala which raises awareness for Ankylosing spondylitis - something he was diagnosed with at 29. Adriana Gentile reports.

Montrealer Michael Santillo was 29 when he was diagnosed with ankylosing spondylitis, a type of inflammatory arthritis.

It affected his life, and he struggled with daily tasks like driving or putting on a pair of socks.

“I was very immobile,” he said.


A photo of Michael Santillo, which shows how his posture was impacted by ankylosing spondylitis. (Submitted by: Michael Santillo)

The diagnosis was in 2018, but Santillo mentioned he felt symptoms at least two to three years prior.

“My symptoms were shooting pains. A lot of the times, I would always have pains in my lower back that would affect my legs and my knees. And then a lot of the times, I would brush it off and think it’s just a bad movement or working too much at the gym. But then the pain would come more aggressive and more painful, to the point that I see myself deteriorating in the way that I would walk. I would have to always bend my knees. I wasn’t able to turn fully my neck.”

A photo of Michael Santillo, which shows how his posture was impacted by ankylosing spondylitis. (Submitted by: Michael Santillo)

Before he got diagnosed, Santillo struggled trying to find out what was wrong with him.

“One day I said, ‘You’re your own doctor, and you need to figure out things for yourself.’ So we would rush to the hospital and get our hands on the rheumatology department that would be able to check me out with MRIs and certain blood tests. And then, that’s why 2018 is my landmark, if you will, that I was properly diagnosed with ankylosing spondylitis,” he said.

Anthony Santillo, Michael’s younger brother, explained the family dynamics during this difficult time.

“We are a tight-knit family, and it was difficult for me, for my parents, my brother, and for us as a family to see Michael struggle,” Anthony said. “And I think the hardest part is that we didn’t know what it was, or what the cause was, or what was happening, and we didn’t know how to deal with it either, right?

“There was a period of time back then where, you know, he was struggling with day-to-day tasks or things that regular people — I don’t like using that word, but, you know, a regular 28-year-old — should be able to do, and he wasn’t able to do it. So, as a family, that was really hard for us at the time because it’s like, how do we support him, or how do we navigate this without knowing what’s happening or what the cause is?”

Let’s Get Loud for A.S. fundraiser chair Michael Santillo (second from right) alongside family members at the first annual Let’s Get Loud for A.S. fundraiser gala in May 2023. (James René-Allard Photography)

After getting diagnosed, Santillo said he felt a sense of relief.

“I was actually hoping that I had something because, for a good three years, like I said, we didn’t know what was going on,” Santillo told CityNews. “I was going to physiotherapists, a naturopath, a chiropractor, and general GPs who just prescribed anti-inflammatories or Celebrex, which is for arthritis, juvenile arthritis, and things were just not working.

“Unfortunately, by being misdiagnosed and not properly treated, I did lose a good 12 per cent to 13 per cent of mobility, which unfortunately, even with the medications that I’m on now, I will never be able to regain.”

He recalls the day he met with his personal specialist rheumatologist, Dr. Egiziano, at the Jewish General Hospital.

“I really felt a sense of relief because he right away pinpointed what I had, with a lot of MRIs that took like 45 minutes each session. I’m claustrophobic, so I hated doing it, but I had no choice, and certain blood tests to trigger and filter through the nervous system, bones, your blood cells.

“When we got the news, some people might not want negative news, but I considered it positive news for myself, because now we know what it is and what I have, and we can properly treat it. It was a sense of relief, finally, after so many years.”

What is ankylosing spondylitis?

According to Arthritis Society Canada, “ankylosing spondylitis (AS) affects the spine and the sacroiliac joints that attach the pelvis to the base of the spine.

“The number of people with a confirmed diagnosis is likely lower than the actual number due to the difficulty of diagnosis, however, estimates suggest as many as one per cent of the Canadian adult population (300,000) lives with AS.”

Santillo says, “it is called the invisible disease because it’s something that, for some people, you can’t see. So, luckily for me, it’s something that people might not notice unless I talk about it. But there are some people that, unfortunately, are in wheelchairs or need to use walkers, and the disease has progressed so severely because they were misdiagnosed later in their lives, which affected more of their nervous system and their bones.

“I always give the comparison of a gargoyle. So, when you sprinkle that magic dust and they just freeze? There were a lot of the patients that, unfortunately, they just freeze and really can’t move.”

Present day

It’s been roughly six years since the diagnosis, and Santillo says he’s doing much better.

Michael Santillo. (Adriana Gentile, CityNews)

“I feel like it’s night and day, so a lot of people, they never really thought about what I had. This is, again, something that I wasn’t born with. It’s not something that’s hereditary; it’s just something that comes and goes like other diseases that you just formulate, unfortunately. So, I’m doing so much better with the treatments,” he said.

Santillo said that each patient is different, and in his situation, he has medication.

After five years on medication and injections, Michael Santillo had discoloration patches on his skin, which he says is due to too much exposure to sun. (Submitted by: Michael Santillo)

“With the medication of Humira, I inject myself every two weeks. So, it doesn’t help and cure the condition. Yes, it helps me live a ‘quote-unquote’ better normal life on my day-to-day.”

“I’m able to drive a car, I’m able to walk without bending my knees. There are certain days that I feel worse than others, maybe due to a change in temperature or stress, which triggers the nervous system. But what the medication helps with is containing and controlling it, so it stops spreading throughout the body and attacking other bones and vertebrae within the body.”

Looking back, Anthony says he’s amazed by everything his brother has been through.

Michael Santillo (left) and his brother, Anthony Santillo (right). (Adriana Gentile, CityNews)

“I think everything happens for a reason,” Anthony said. “I’m a firm believer in that, and I think once he was diagnosed, he kind of took charge of his own situation and he took charge of what it was. And once the treatment plan, the medical plan, and the health plan were put into place, it was like, ‘OK, now where do we go? How do I start to build my life back? Or how do I start to go back to the person that I was?’

“And I think you never go back to the person that you were before the diagnosis. You just learn to live with it and become a better version of yourself. And I think that’s what’s happened in the last five to six years.”

Let’s Get Loud for A.S.

Now, Santillo is in the driver’s seat and getting loud to raise awareness and help spread the word through his annual fundraiser gala, “Let’s Get Loud For A.S.,” saying he didn’t want the diagnosis to control his life.

“I’m very proud because it’s something that I said to myself one day. We were having a family dinner, like we normally do on a Sunday, and I always said, you know, we always help other communities and other diseases, of course, with the wonderful fundraisers we have throughout Montreal, whether it be for breast cancer or for leukemia. So I said, why can’t we do something for ankylosing spondylitis? Because it’s a word that a lot of people have difficulty pronouncing or spelling, and a lot of people don’t even know what it is,” he expressed.

Decorations at a Let’s Get Loud for A.S. fundraiser gala. (James René-Allard Photography)

“I know a lot of people in the industry so I said, ‘this is the idea, this is what I want to do. I want to create a fundraiser gala.'”

Santillo says the Canadian Spondyloarthritis Association (CSA) is there to help and support patients like him, and raise awareness.


Canadian Spondyloarthritis Association poster. (James René-Allard Photography)

“It has been around, I think, for well over 12 years. They’re fairly young in that sense, but they’ve done so much. So I wish I knew who they were prior to my diagnosis because they have amazing support programs. They help with patients that struggle mentally as well because, when you’re diagnosed, you’re in a dark space, and they’re there to help. But more importantly, they’re there to help with pharmaceutical companies,” he said.

Santillo partnered with them to make the Let’s Get Loud for A.S. fundraiser gala possible, with the funds raised going to a good cause.

“The injections that I receive, and the majority of patients receive, are super expensive,” Santillo said. “They’re about $2,600 for two injections. So in my case, it’s every two weeks; some people can get them every week, some people every month. So, with the funds that I’ve helped create, it helps disperse those funds to support programs, helping rheumatologists with high-end MRI machines and blood testing for faster diagnosis.

“Back then, it would take a good seven to 10 years to be properly diagnosed. In my case, I was diagnosed right away, so now they’ve lowered it down to at least two to three years before you get properly diagnosed, but we want to shrink that amount of time. So that’s why, when I spoke with my family, I said, ‘I’m going to do this.’ I had to do an approval proposal program for the CSA because I want to be attached to them, and they have to approve.

Let’s Get Loud for A.S. fundraiser chair Michael Santillo (fourth from left) with committee members and CSA members, holding a cheque for $71,500 that was donated. The amount was raised on May 4, 2024. (James René-Allard Photography)

“They finally did, and every year since 2023, I’ve been very comfortable speaking about ankylosing spondylitis. I’m actually the ambassador for Quebec for other patients for the CSA. So, I said, it just goes hand in hand.”

Anthony is also getting involved as the event’s treasurer.

Anthony Santillo. (Adriana Gentile, CityNews)

“It’s my brother, so there’s nothing that I wouldn’t do,” Anthony said. “I have a background in finance, so it’s something that I know how to do. So I kind of just jumped in there with Michael and with our other VP, Manon Caissy, it’s just something that I naturally came to do. I can’t say no.

“I come from a school, a train of thought, a man for others, and it’s kind of embedded in my DNA, in a sense. And it’s my brother, so how can I not help or do anything? How can I not help out? And to me, I don’t see it as giving back or helping. It’s just something that I do for my brother, for my family, and we also have fun with it.”

Michael Santillo (left) and his brother, Anthony Santillo (right) and Manon Caissy (center), VP for Let’s Get Loud for A.S. (James René-Allard Photography)

In terms of the event, Anthony says it’s a lot of work, but he’s happy to see how it brings people together.

“If anyone’s ever planned an Italian wedding, we do it every year. And we do it essentially almost for free, or with as minimal expenses as we possibly can, which is even harder. It was hard at the beginning, but it’s great to see a community come together for a great cause, to raise awareness for an unknown disease and to help patients like Michael.”

Santillo has a support system behind him.


Michael Santillo giving a speech at a Let’s Get Loud for A.S. fundraiser gala. (Submitted by: Michael Santillo)

“Michael is lucky in the sense that he has a family, he has support, and he has the privilege of being surrounded by a good medical team. Not everybody has that opportunity or that privilege, and a lot of patients were misdiagnosed and continue to be misdiagnosed. So, it’s a different situation. We were lucky in the sense that it was caught early, it was diagnosed early, and Michael does have a strong support system. We do have a strong support system,” said Anthony.

“We just want to create an event to raise awareness for a disease and to show people that, listen, this is what it is, and this is OK. The funds benefit the association, which does amazing work in the community. They do great things for people, for patients all over Canada, and they partner with other associations throughout the world. So a lot of the things that they’re finding in Quebec and with Michael, they’re talking about it — maybe we should do this, we can replicate this idea in another province, or we can replicate this in another country. And I think that is amazing to see.”

The inspiration behind the name

When you hear the name “Let’s Get Loud for A.S.,” you may ask “why this name?”

“Why I decided to call it ‘Let’s Get Loud for A.S.’ is obviously because of the infamous song by Jennifer Lopez,” said Santillo. “I never understood a certain lyric in the song, so one day, when I was in my darkest moments, I heard it on the radio, and that moment really helped me in a time of struggle, in a time when I couldn’t go to work, in a time when I said, ‘I’m such a young age, why me? Why me?’

“When I heard that verse, ‘If you want to live your life, live it all the way, and don’t you waste it,’ it really motivated me to continue on and not let the disease define me, so that I could conquer it and help others. And ‘Let’s Get Loud for A.S.’ was born. So, it’s a fabulous event to raise funds.”

Decorations at a Let’s Get Loud for A.S. fundraiser gala. (James René-Allard Photography)

“The butt of the joke is that everyone associates the song with my fundraiser. Actually, we did a great job marketing it because now, whenever people are at parties or in any setting and they hear the song, they think of, you know, the first Saturday of May — it’s the fundraiser.”

About the event

To date, the event has raised more than $125,000 net and counting.

Santillo said, “it’s an annual, I would say, gala party event fundraiser to raise funds, raise awareness, and get loud,” Santillo explained. “It’s a great formal event where everyone in Montreal gets together and is very eager to come because now they know what I have, they know what AS is, and it shines a big light on other patients who are struggling in the dark.”

Michael Santillo preparing for a Let’s Get Loud for A.S. fundraiser gala. (Submitted by: Michael Santillo)

The event is held every first Saturday of May because that’s International AS Day. This year, it’s taking place on Saturday May 3 at Plaza Antique, and they’ve already raised over $65,000 and counting.

“Throughout the country, let alone the world, there are events going on in support of patients with ankylosing spondylitis,” Santillo said. “On the night, it’s obviously a big gala, it’s formal, there’s entertainment, an open bar, raffle prizes to be won, and food, of course.

“The whole point of it is that we have a CSA president, we have doctors, psychologists, and other patients who are suffering with AS. They listen to all the speeches and research updates. So, with every year that goes by, we get updates, and as a community, the people who come to the event understand the kind of work the CSA has done in the past year leading up to ‘Let’s Get Loud for AS.’ The corporate sponsors and guests who attend actually understand and know where these funds are going, and they feel a sense of pride, recognition, and a job well done.”

Let’s Get Loud for A.S. fundraiser gala poster. (Antoinette Carlucci, Communications and Content Manager, Canadian Spondyloarthritis Association)

Anthony says he is proud of his brother’s accomplishment.

“To see an idea that he came up with on his own, I did bully him a bit about it. We joke about that, but we did, as brothers normally do, egg each other on about it. And he did see it to fruition. I was like, ‘Prove me wrong. Let’s see. You have this idea, and I can actually do it,’ type of thing. And he did, which is amazing. And I’m so proud of him.”

Anthony explained that this event as helped Santillo deal with the disease.

“It’s helped him talk about it because there was a certain time when he didn’t want to talk about it. And every patient has to kind of deal with it or come to terms with it on their own. People would ask me, ‘What’s going on with Michael?’ and it wasn’t my place to talk about what was going on with Michael. It’s up to Michael to talk about what’s going on with Michael. And I think the creation of ‘Let’s Get Loud’ has helped him come to terms with it and has helped him talk about it openly.

“Sometimes there’s a stigma because it’s an unknown disease and it’s not something that’s visible. Some people would say, ‘But he doesn’t look sick.’ No, he doesn’t look sick, but he is. It’s something that he’s living with. It’s something that we’re all living with. And just because you can’t see it doesn’t mean it’s not there, that kind of thing. So I think the event itself has helped him deal with it, has helped our family deal with it, and come to terms with it in a positive way.”

Let’s Get Loud for A.S. fundraiser gala. (James René-Allard Photography)

Through the event, Santillo hopes to inspire others.

“It is to raise awareness and show where these funds are going to help other patients. It’s also humbling for me to see other patients who come to the event that, unfortunately, are far worse off than me.”

“It’s a great event where we see the change, we see the support groups, and patients,” he said. “The whole point is that the people who are there always thank me, and you know, it’s always an emotional event because they see someone who’s driven and that this disease did not take over their life. A lot of these people are much older than me- – in their 50s, 60s, late 40s — who cannot work, who have families, who are in wheelchairs. So they see a light at the end of the tunnel.”

For Santillo, things feel surreal at times.

“I still believe it’s like a dream, and I go back to that discussion at our family supper because it was just an idea. So to see an idea come to reality, for me, it’s something that is priceless.”

He explains that the event welcomes 350 people as they would like to keep it intimate.

“It’s such a formal event, and to see the type of people who fly in from Vancouver, Toronto, New York, and different doctors, because they can’t believe that I’m the first one in Quebec who has AS, who wanted to do something about it, and who actually did.”

“There is other events in other parts of Canada but I’m proud that’s why I’m the ambassador for CSA for A.S. because I’m the first one to actually put a dream into reality and that’s actually very successful and I’m not a company I’m just a person right, so my small team and my small committee, we are small but we are very mighty what we accomplished.”

Decorations at a Let’s Get Loud for A.S. fundraiser gala. (James René-Allard Photography)

Santillo is sending a message to others who might be struggling.

“For those who don’t know what they have, I think at the end of the day, obviously, we are our own doctors. So if you do experience symptoms and feel the type of symptoms that I did or others — because there’s quite a lot, especially on the medications — you know, of course we say don’t Google, but if you do see certain symptoms now, if you do come to ‘Let’s Get Loud,’ you meet certain doctors, psychologists, rheumatologists. The word is out there.

“Don’t be shy if you are experiencing these symptoms. Don’t be shy to talk to your doctors and say, ‘Can you please let me know, do I have ankylosing spondylitis? Is this something we can dig deeper into with a rheumatologist?’ Because if you don’t speak up, you might not be properly diagnosed, and I don’t want years to go by and, if you do have it, for it to become worse.

“Coming together as a community on May 3rd really makes a big difference, not only physically and mentally, but just to have a good time and for a good cause.”

Support from others

“Thank you to all my doctors, the CSA, because without them this wouldn’t be existing. I want also obviously thank my committee, because without them I’m just the face. I’m just the person that has the medical condition,” said Santillo.

“Anthony and I work hand in hand behind the scenes. So for them, it’s a big accomplishment as well. I also want to thank my family for supporting me, because it’s not easy being on certain medications and dealing with mood swings and a lot of pain. So they know what we’ve experienced before 2018, behind our family home, behind closed doors. So I just want to say thank you.”

“I’m super proud of my older brother for what he’s been able to do and for what he struggled with and how he took control of it and made it his own, in a sense. And we’ve done great things for the association, and we’re going to continue to do great things for the association. Come support us for the event this year. It’s a great time, great people, it’s a great community, and it’s for a great cause,” added Anthony.

For more information on Let’s Get Loud for A.S., visit www.lglas.ca

Top Stories

Top Stories

Most Watched Today