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One man's story about loving someone with an incurable disease.

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Before she was diagnosed with multiple sclerosis, Rosanna loved to dance.

"Rosanna can dance to all kinds of music. Cha-cha, merengue, salsa, bolero, you name it," he laughs. "Now she dances in the car, sitting down. We pull up to a stop sign, and I say, 'Easy, girl!'"

Image via iStock.

Andy and Rosanna have been married for 38 years. Prior to her diagnosis, Rosanna was an executive secretary, the mother of two young boys, an avid chef, and a skilled dancer. Andy traveled often for work but always made time to see his sons' soccer games, jazz concerts, and marching band competitions at home in south Florida. Their family lived an active, busy, happy life. "It was happy moments," says Andy.

Then, two decades into their marriage, Rosanna was diagnosed with multiple sclerosis (MS). She was suddenly forced to contend with an unfamiliar, painful, debilitating disease. And Andy had to figure out how to play his role as her husband, caretaker, and lifeline.

"The past 18 years has been like a small roller coaster," says Andy. "It was very, very tough for both of us."

When Rosanna was diagnosed, neither she nor Andy knew what to expect. She became fatigued, began falling down, and experienced migraines. Together they read articles and went to different doctors. Andy drove them to her various appointments. "To Miami, it's about 65 miles, and she can't drive on the highway due to her MS symptoms. I took over driving to the doctor's office a long time ago," he says.

Eventually Rosanna found a routine that worked for her, and they settled into learning to live with, and trying to reduce, her MS relapses. But Rosanna had to leave her job to apply for disability — an application that would take over seven years to get approved. Andy had to leave his job, too.

"I gave up my job to be with her," Andy says. "I was traveling two, three days a week, and I was leaving her alone. I didn’t like that at all." He took a more stationary job and along with it the challenge of supporting his family and putting his older son through college while learning to help his wife live with MS.

Rosanna and Andy take on the challenges that life brings together. Image via Andy, used with permission.

An often overlooked element to a chronic condition like MS is how difficult it can be for loved ones to learn how to support someone who has it.

It's incredibly important for caregivers to make time to care for themselves — something that many people struggle with because it makes them feel selfish. But it's necessary.

For Andy, self-care comes in the form of his bike. "I've been riding a bicycle for the last 30 years. My relaxing time is riding my 30 miles. It takes my mind away from everything." It's even given him an opportunity to connect with and contribute to the MS community by participating in rides that raise funds for research.

Image via Andy, used with permission.

He and his wife also go to "CHATS," which are live events hosted by MS LifeLines (a patient support service), where they talk to others both in and out of the MS community about their experience living with the disease. "I enjoy it very much because there's MS patients we know and those we don't," Andy says.  

Telling their story helps them connect with the community and make friends who can relate to their experience. In addition to "CHATS," MS LifeLines provides an online resource called My Story, where people affected by MS can share their stories and read the stories of others going through a similar situation.

The #1 key to balancing it all, says Andy, is teamwork.

It can be hard to strike a balance of caring enough and caring too much. "At first, Rosanna was afraid to tell anybody what she had because she didn’t want to worry them," Andy says.

But with time and practice, they've found a balance that works for them. "I care for the house. I help her with the dishes," he says. Rosanna wanted to keep cooking for her husband, but with MS, that isn't always possible. "So I make dinner and she makes lunch," Andy says. "We work together as a team. That's the only way that you can help each other. I help her and she helps me."

At the end of the day, the best way to love someone with MS is by simply being a good partner.

MS causes all sorts of difficulties that fluctuate from day to day. "One day she’s in a bad mood, and I've got to deal with it," says Andy. "But I have bad moods, too. That's marriage, isn’t it?"

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How can riding a bike help beat cancer? Just ask Reid Moritz, 10-year-old survivor and leader of his own “wolfpack”

Every year, Reid and his pack participate in Cycle for Survival to help raise money for the rare cancer research that’s helped him and so many others. You can too.

all photos courtesy of Reid Moritz

Together, let’s help fuel the next big breakthrough in cancer research

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There are many things that ten-year-old Reid Wolf Moritz loves. His family, making watches (yes, really), basketball, cars (especially Ferraris), collecting super, ultra-rare Pokémon cards…and putting the pedal to the medal at Cycle for Survival.

Cycle for Survival is the official rare cancer fundraising program of Memorial Sloan Kettering Cancer Center (MSK). One hundred percent of every dollar raised at Cycle for Survival events supports rare cancer research and lifesaving clinical trials at MSK.

At only two years old, Reid was diagnosed with pilocytic astrocytoma, a rare type of brain tumor.

Pediatric cancer research is severely underfunded. When standard treatments don't work, families rely on breakthrough clinical trials to give their children a real shot at long-term survival.

When Reid’s chemotherapy and brain surgery didn’t work, he was able to participate in one of MSK’s clinical trials, where he’s received some incredible results. “Memorial Sloan Kettering has done so much for me. It's just so nice how they did all this for me. They're just the best hospital ever,” Reid recalls.

And that’s why every year, you’ll find Reid with his team, aptly named Reid's Wolfpack, riding at Cycle for Survival. It’s just Reid’s way of paying it forward so that even more kids can have similar opportunities.

“I love sharing my story to inspire other kids to PERSEVERE, STAY STRONG and NEVER GIVE UP while also raising money for my amazing doctors and researchers to help other kids like me.”

Reid remembers the joy felt bouncing on his father’s shoulder and hearing the crowd cheer during his first Cycle for Survival ride. As he can attest, each fundraising event feels more like a party, with plenty of dancing, singing and celebrating.

Hoping to spread more of that positivity, Reid and his family started the Cycle for Survival team, Reid’s Wolfpack, which has raised close to $750,000 over the past eight years. All that money goes directly to Reid’s Neuro-Oncology team at Memorial Sloan Kettering.

In addition to cheering on participants and raising good vibes at Cycle for Survival events, Reid even designs some pretty epic looking merch—like basketball shorts, jerseys, and hoodies—to help raise money.

If you’re looking to help kids just like Reid, and have a ton of fun doing it, you’re in luck. Cycle for Survival events are held at Equinox locations nationwide, and welcome experienced riders and complete newbies alike. You can even join Reid and his Wolfpack in select cities!

And if cycling in any form isn’t your thing, a little donation really does go a long way.

Together, let’s help fuel the next big breakthrough in cancer research. Find out more information by checking out cycleforsurvival.org or filling out this interest form.

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They thought their son lived an isolated life. But when he died, friends showed up in droves.

Mats Steen's parents were shocked to learn their severely disabled son had lived a rich, independent life they knew nothing about.

Netflix/YouTube

Mats Steen lived a secret life that his family only discovered after he died.

Mats Steen was only 25 years old when he passed away, his body succumbing to the genetic disease that had slowly taken his mobility since childhood. He'd lived in a wheelchair since his early teens, and by his 20s, his physical abilities had deteriorated to the point of only being able to move his fingers. He could push buttons and use a mouse, and he spent nearly all of his waking hours playing video games in his parents' basement.

His family loved him and cared for him through it all, giving him as much of a normal life as they could. But they also lamented everything they knew he'd missed out on. "Our deepest sorrow lay in the fact that he would never experience friendships, love, or to make a difference in people's lives," Mats' father shares.

Mats left behind the password to a blog he kept. Not knowing if anyone would actually read it, his parents published the news of Mats' passing in a blog post, adding their email address in case anyone wanted to reach out.

Much to their surprise, messages began pouring in from around the world—not just with condolences, but with heartfelt stories from people who called Mats their friend.

The Steens soon discovered that their son had lived a much fuller life than they'd ever imagined—one that included all the things they always wished for him.

As his online life was revealed, the family learned that Mats began his days with a routine 30-minute sprint through the forest. He frequented cafes and pubs, chatting with strangers and flirting with women. He sat by campfires having heart-to-heart conversations. He made friends and enemies. He fought heroic battles. He supported people in times of need. He gave advice that people took. He experienced his first kiss.

And he did it all as "Ibelin," his handsome, muscular avatar in the online game World of Warcraft.

- YouTubewww.youtube.com

Mats' life is showcased in the documentary, "The Remarkable Life of Ibelin," in which his parents share the story of how they discovered their son's group of friends they didn't know he had.

People who've never played an open world roleplay game like World of Warcraft may wonder how real community can be built through it, but Mats' story proves it's possible. The friends he made through the game have shared the real influence he'd had on their real lives, from helping them with problems they were facing to empowering them to make positive changes in their relationships.

Though he never met them face-to-face, Mats' online friends say he made a significant impact on them.

A young woman Ibelin had connected with as a teenager—the one with whom he'd shared that first virtual kiss—shared that her parents had taken away her computer when they feared gaming was interfering with her studies. When she logged on at a local library, Mats gave her a letter he had written to give to her parents, encouraging them to talk with her about her gaming hobby and to work out a solution together that didn't require her to give it up completely. She printed it and gave it to them. Miraculously, it worked.

Another woman had been having a hard time connecting with her autistic son as a young adult. When she talked with Ibelin about her struggles, he suggested that she and her son start gaming together and connect in that way first. Eventually, that connection via the virtual world led to warmer in-person interactions between them—and a life-changing shift in their relationship.

"I don't think he was aware of the impact that he had done to a lot of people," the mother shared.

Mats interacted with the same online friends as Ibelin for years, going through the kinds of ups and downs all real friendships experience. He kept his physical condition a secret until close to the end of his life, when he finally opened up to another player who convinced him to share his reality with the others. Some traveled from other countries to attend his funeral, with one of them speaking on the group's behalf and a few of them serving as pallbearers. Those who knew Ibelin also held a memorial in-game at his virtual gravesite—a tradition that has spread beyond just his own guild.

Typically, we think of someone escaping the real world and spending hours a day playing video games as unhealthy, but for Mats, it was a lifeline. As Ibelin, Mats was able to have a level of independence and a rich social life that simply wasn't possible for him in the offline world—an uniquely modern phenomenon that technology and human creativity have made possible.

Mats' impact on his online community was real, and 10 years after his passing his impact is spreading even further.

Duchenne muscular dystrophy, the genetic disease that Mats lived with and ultimately died from, affects 300,000 boys worldwide. It only affects males and it has no cure. But CureDuchenne, a global nonprofit dedicated to funding and finding a cure, has partnered with Blizzard and World of Warcraft in Mats' honor. From now until January 7, 2025, World of Warcraft players can purchase a limited-edition pet fox named Reven ("fox" in Norwegian). The Reven Pack, which includes a transmog backpack and Reven’s Comfy Carrier, costs $20, with 100% of the purchase price being donated to CureDuchenne.

The Reven Pack on World of Warcraft—100% of purchase cost goes to the CureDuchenne foundation.World of Warcraft/CureDuchenne

“Mats Steen lived a life in World of Warcraft that he couldn’t in the real world as he fought Duchenne muscular dystrophy alongside his incredible family, who I’m proud to have met and fallen in love with,”said Holly Longdale, executive producer of World of Warcraft. “Working with CureDuchenne for our Charity Pet Program, in honor of Mats’ memory, allows us to harness the power of our phenomenal global community to bring meaningful impact to so many lives.”

You can learn more about Mats' story in the award-winning documentary, "The Remarkable Life of Ibelin," on Netflix and learn more about the CureDuchenne fundraising initiative with World of Warcraft here.

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Maori members of New Zealand government perform unforgettable protest Haka in parliament

The protest of a proposed controversial law has become a rallying cry.

Photo credit: Canva

Haka preformed in protest on New Zealand parliament floor

By now most people are used to seeing the haka performed at sporting events or in celebration of life events. But the dance isn't just a dance of celebration, it's a dance that started as a war dance so it can be used in ways that are less jovial in nature. Maori members of the New Zealand parliament recently used the haka to protest a bill that would require the reinterpretation of a treaty between Britain and the Maori people from 1840.

The Treaty of Waitangi is 184-years-old and was originally signed between the British Crown and 500 Maori Chiefs. Maori people are indigenous to New Zealand and the treaty was to determine how the country should be governed. But the reinterpretation would restrict how the treaty can be interpreted just as Maori people continue to gain more rights in their native country.

The bill was introduced by the conservative, ACT New Zealand party, who are making a case than non-Indigenous people are missing out on opportunities due to policies designed to uplift Maori people, according to Reuters. There have been protests by the Maori since it was announced that the bill would be heard in parliament but the protest on the floor took some members by surprise.

Read World Cup GIF by World RugbyGiphy

In a powerful display of disagreement with the new bill one of the Te Pati Maori MPs stood and started the haka call that rang through parliament. As the haka started she ripped a copy of the bill in two while other Te Pati Maori MPs and people observing began to participate in the dance.

The form of protest seemed to fluster the man presiding over the meeting, causing parliament to be suspended briefly from the disruption. It doesn't look likely that the bill will pass as it doesn't have enough support outside of the initial readings. The protest caught the attention of social media and has since gone viral with over 188.9 million views and more than 14.5 million likes on the Whakaata Maori TikTok page.


@whakaatamaori Parliament suspended as Māori MPs perform haka joined by public gallery. @Te Ao with Moana @Te Ao Māori News @TUKU ♬ original sound - Whakaata Māori

Overwhelmingly people support the Maori MPs protest method on the parliament floor with one person saying, "This is what standing together looks like. I always get goosebumps when I come across a Haka. It’s so much passion in them."

"For people saying it was too much since 2023 the goverment in charge of new Zealand has been getting rid of things that are important to the Maori people such as their health authority also school language programs but the most recent one that has cause an out cry and protest from the Maori people is one of the government members wants to redefine the interpretation of the Treaty of Waitangi also known as Te Tiriti o Waitangi I'm not from New Zealand I don't want to speak over Maori voices but have seen videos from Maori people talking about it however I wanted add context for this," someone writes in a multipart comment thread.


"Now that's how you make a statement! The fact the house was suspended, means it was heard," another shares.

"This protest gives my body chills.. powerful demonstration. these are the rally cries of all our ancestors," someone else chimes in.

The Maori people currently only make up 20 percent of the population of New Zealand and have been the subject of oppression and discrimination. While the Maori people enjoy more rights and privileges than previous generations, the gains were hard fought, relying on the Treaty of Waitangi as a guide. This bill would essentially strip the Maori people of the full equality they're after and the haka protest was a strong stance against backsliding into a not so distant history.

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Pop Culture

Brit shares the one-word 'dead giveaway' that American actors are doing an English accent

There's one word they never get right.

via Warner Bros Discovery

Peter Dinklage on "Game of Thrones?

When it comes to actors doing accents across the pond, some Americans are known for their great British accents, such as Natalie Portman ("The Other Boleyn Girl"), Robert Downey, Jr. ("Sherlock Homes"), and Meryl Streep ("The Iron Lady").

Some have taken a lot of heat for their cartoonish or just plain weird-sounding British accents, Dick Van Dyke ("Mary Poppins"), Kevin Costner ("Robin Hood: Prince of Thieves") and Keanu Reeves ("Bram Stoker's Dracula").

Some actors, such as Tom Hardy (“The Drop”) and Hugh Laurie (“House”), have American accents so good that people have no idea they are British.

Benedict Townsend, a London-based comedian and host of the “Scroll Deep” podcast, says there is one word that American actors playing characters with a British accent never get right. And no, it’s not the word “Schedule,” which British people pronounce the entire first 3 letters, and Americans boil down to 2. And it’s not “aluminum,” which British and American people seem to pronounce every stinking letter differently.

@benedicttown

The one word American actors aways get wrong when doing an English accent

What word do American actors always get wrong when they do British accents?

“There is one word that is a dead giveaway that an English character in a movie or a TV show is being played by an American. One word that always trips them up. And once you notice it, you can't stop noticing it,” Townsend says. “You would see this lot in ‘Game of Thrones’ and the word that would always trip them up was ‘daughter.’”

Townsend adds that when British people say “daughter,” they pronounce it like the word “door” or “door-tah.” Meanwhile, Americans, even when they are putting on a British accent, say it like “dah-ter.”

“So top tip if you are an actor trying to do an English accent, daughter like a door. Like you're opening a door,” Townsend says.



What word do British actors always get wrong when doing American accents?

Some American commenters returned the favor by sharing the word that British actors never get right when using American accents: “Anything.”

"I can always tell a Brit playing an American by the word anything. An American would say en-ee-thing. Brits say it ena-thing,” Dreaming_of_Gaea wrote. "The dead giveaway for English people playing Americans: ‘Anything.’ Brits always say ‘EH-nuh-thin,’” marliemagill added.

"I can always tell an actor is English playing an American when they say ‘anything.’ English people always say it like ‘enny-thin,’” mkmason wrote.



What is the cot-caught merger?

One commenter noted that the problem goes back to the cot-caught merger, when Americans in the western US and Canadians began to merge different sounds into one. People on the East Coast and in Britain pronounce them as different sounds.

“Depending on where you live, you might be thinking one of two things right now: Of course, ‘cot’ and ‘caught’ sound exactly the same! or There’s no way that ‘cot’ and ‘caught’ sound the same!” Laura McGrath writes at DoYouReadMe. “As a result, although the different spellings remain, the vowel sounds in the words cot/caught, nod/gnawed, stock/stalk are identical for some English speakers and not for others.”

American actors owe Townsend a debt of gratitude for pointing out the one thing that even the best can’t seem to get right. He should also give the commenters a tip of the cap for sharing the big word that British people have trouble with when doing an American accent. Now, if we could just get through to Ewan McGregor and tell him that even though he is fantastic in so many films, his American accent still needs a lot of work.

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Millennial dad of 3 shuts down boomer parents for their 'ridiculous' holiday expectations

"Why is it that every time I have to make the effort for you, yet you can't do the most basic thing for me?”

via Canva/Photos

A Millennial dad has had it with his boomer dad's expectations.

A TikTok video posted by @carrerasfam is going viral, with over 300,000 views, because so many millennial parents can relate. In the video, a husband politely but firmly tells his “practically retired” baby boomer dad that he’s not taking his 3 young kids on a 400-mile drive to their house for the holidays.

Carerras Fam is a popular TikTok page about “all things postpartum and mamahood.” The husband opens the conversation with his dad by explaining all the inconveniences of taking 3 young kids on a long road trip. “I know you want us to drive down for the holidays, but it's kinda ridiculous that you want me to pack my 3 kids with their portable beds with my clothes, their clothes, the formula, everything that goes on with raising 3 kids and having them feel comfortable. Drive down for over four hours just so that we could spend some time in your house?” the husband says.

@carrerasfam

Sorry it’s just so much work. But you’re welcome to visit us #millennial #millennials #parents #parenting #parentsontiktok #boomers #millennials

It’s obviously inconvenient for the couple to pack up their kids and drive 4 hours, but it’s also unsafe because the house is not baby-proof. "I'm gonna have to run around, make sure that they don't break any of your stuff, and which you will take care of them,” the husband continues using sarcastic air quotes.

The dad brings up another great point: His parents are in good health, so why don’t they drive to their house? “You could visit. You don't have little kids,” the dad continues. “You don't have anything going on.

"Why is it that every time I have to make the effort for you, yet you can't do the most basic thing for me?”

It’s clear from the phone call the dad understands that traveling with the kids and staying in a house that isn’t correctly set up for young kids will make the holiday a struggle. Instead of making memories, they’ll most likely be running around bent over trying to save their kids from breaking something or hanging out at Target buying electrical socket plugs and a bottle brush because they left theirs at home.



The video struck a chord with many millennial parents.

“First holiday with a kid… parents are confused why I won’t drive 9 hours with a 3mnth old for Christmas,” too_many_catz writes. “The ‘not baby proofed’ part hit my soullllllll. It’s so stressful having to chase your kids around and ask to close doors, move pictures, block stairs, etc. And nobody takes you seriously!" OhHeyItsIndy added.

It’s also expensive for young families to travel. “Add to it they want us to spend money on gas, airfare, etc. when we live paycheck to paycheck and rent while they own homes and live comfortably off a pension,” another user wrote.

This one hit hard: “They always act like you're asking the world of them, yet they will willingly go on any other vacation that they choose,” Mackenzie Byrne wrote.

TX Travel Chick may have hit the nail on the head with her explanation for why boomer parents expect their children to road trip it to their house for the holidays. “Because we are used to following their orders!!! REVOLT,” she wrote.

Ultimately, it would be interesting to learn why boomer parents want to inconvenience their kids when it would be much easier for them to take a trip to see them, especially if they can afford a hotel. One wonders if they are being entitled or if they’ve forgotten how hard it is to travel with young kids.

Parenting

Tom Brady says parents today don't let kids fail enough. Is he right?

“Every time they mess up, we send them to an easier place to succeed.”

By Congressman Charlie Crist - Public Domain & Unsplash

Tom Brady — ever heard of him? The multi-time Super Bowl winner, NFL MVP, and pretty much the most decorated NFL athlete of all time retired from on-field play before last season. But he's been keeping himself pretty dang busy in retirement with a broadcasting gig, becoming part-owner of the Las Vegas Raiders, and of course, being a dad to his three kids.

Tom Brady recently spoke at a Fortune Global Forum event about his leadership style and how business executives could learn from his self-made success. His thoughts on leading as a father were much more interesting. And in his opinion? Some parents are too quick to coddle these days.

“Think of today’s world, how we screw these kids up,” Tom said. “Every time they mess up, we send them to an easier place to succeed.”


- YouTubewww.youtube.com

What he means is that we might steer them away from goals that are too lofty or likely to lead to disappointment. He thinks parents are too quick to discourage their kids from 'reaching for the stars' in order to save them from heartbreak, especially when they're uber-talented.

His parents sure didn't, and look how it worked out for him!

“The blessing my parents gave me was when I was that long shot as a kid who was a backup quarterback on a freshman team? They never said, ‘Man, don't do that. It's gonna be too hard. Let's do something different. Let's think about another backup plan.’ They kind of said, ‘You know what? Go for it. Whatever you want to be, go for it.’ And that's probably my parenting style," he said.

What do experts think? Is Tom Brady right? Are parents today too "soft"?

"I think some are and it's not a bad thing," says Dr. Cynthia Edwards-Hawver, a licensed psychologist.

It's a matter of more and more parents shifting their priorities, she says.

"Parents today are more likely to prioritize emotional intelligence, mental health, and individuality in their kids, which can be mistaken for 'softness.'"


man in red and white football jersey holding white and red football Photo by Cian Leach on Unsplash

We're all so much more aware of mental health concerns than we were a few decades ago. Efforts to protect longterm mental well-being in kids can sometimes be perceived as coddling.

But let's be real: Not every kid will grow up to be the Tom Brady of their field. Pushing hard to achieve your dreams is a good thing, but it's easy to push too far and sacrifice your mental and physical health. And there aren't always seven Super Bowl rings and hundreds of millions of dollars waiting for you on the other end.

Kids today also face more pressure than ever to achieve, in part due to social media. But they're also being pressured to specialize at ridiculously early ages (in sports, academics, etc.) or risk "falling behind" despite research showing there's no need to do so.

Times have changed since Tom Brady was the backup QB at Michigan! It's OK for parents to be mindful of that balancing act and of modern concerns young people face.

Of course, there is some truth to Tom Brady's criticism. Protecting your kids from failure and heartbreak isn't doing them any favors, instead it robs them of a chance to learn accountability, independence, and resilience.

"There’s a fine line between encouragement and pressure. Make sure your child knows that their worth isn’t tied to their achievements," Edwards-Hawver says.

I don't know about the business advice, but Tom did close with some good words of encouragement for all the parents out there.

“The parents in the room know that being a parent is probably the hardest job all of us have and we screw up a lot and I've screwed up a lot as a parent,” he said. “So I don't want to seem like I'm some expert in parenting because I'm certainly not that.”

"I try to just be dependable and consistent for them and honestly, whatever our kids choose as we know to do whatever they want to do in life, we gotta support.”

He added that one of his sons wants to play pro basketball, but Tom didn't know if he'd ever develop the vertical leap to do it. Regardless, he always ensures his son that it'll happen one day if he keeps working — even though he can't really promise that for sure.

"I want him to know that his dad's got his back."

Now that's a winning mindset.

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