Mark Rosenthal is about to embark on the most important trip of his life – one he is confident will actually save it.
After months of extensive fund-raising efforts, the popular Insurance Forums member from Griffin, Ga., is set to depart for Pueblo, Mexico on Sunday, April 24, to undergo a 28-day experimental treatment called Hematopoietic Stem Cell Transplantation (HSCT), which will be followed by a long, intensive (and expensive) recovery period.
Rosenthal, as many forums members are aware, has been battling the progression of Multiple Sclerosis (MS), an autoimmune disease of the central nervous system in recent years, forcing him to put his successful insurance career on hold. The procedure in Mexico has the potential to stop the progression of MS in his body, which could greatly improve his quality of life moving forward.
Prior to his departure, Rosenthal wanted to take some time to thank his fellow Insurance Forums members for helping him reach the intimidating goal of $60,000 needed to pay for the treatment and other costs associated with it.
He said he wants Forums members to know he appreciates all the help people have given him and that he’s going to “fight like hell” to stop his MS in its tracks.
“Today you’re catching me on a good day. I’m feeling pretty good, I have no brain fog, and I haven’t pushed myself,” Rosenthal said during an hour-long April phone interview with Insurance Forums. “You might talk to me tomorrow and I won’t remember talking to you today.”
Diagnosed years ago
Rosenthal’s saga with MS goes back about a decade, to when he began losing vision in his right eye. “That was the first sign of MS,” he said, although a formal diagnosis wouldn’t happen until years later.
“I went to doctor after doctor and I told them look, when I get hot, something bad happens. I think they all thought I was crazy,” he said. But finally he went to see a neuro-ophthalmologist who did a flashlight test, and Rosenthal’s eyes didn’t evenly dilate. “He said you’ve either got a brain tumor or MS,” Rosenthal said. “And that was the first time I’d ever heard the words ‘MS.’”
MRIs of the brain and neck followed, showing he had lesions, and further tests about 5 years ago confirmed he had MS.
“The only symptoms I was having back then was when I got hot, I would just shut down. And then my right eye’s vision permanently altered – but when I got hot I would go totally blind in my eyes,” he said.
Dealing with these ailments and the prospect of symptoms getting worse over time was a rude awakening for the very active and involved 37-year-old, married father of five, who had been working since he was 15 and has “a brain that never stops thinking and creating things and doing things.”
Three years ago he says he could outrun anybody. And then about 2 years ago, “the best way I could describe it is, you put 100-pound weights on both your ankles. You can still walk, but you won’t do it for long. And with my progression now, what happens is [it feels like] more and more weight keeps getting added to those ankles,” Rosenthal said. “Last year I could walk an hour, and then it became 30 minutes, and today it’s about 10 minutes of standing or walking before I give out.”
Progression
After bouncing around the health care system, he ended up with Humana and went to see a doctor to get a refill for the MS drug Avonex, which keeps the immune system suppressed.
“The first thing he told me was he was not going to refill my subscriptions – I no longer needed it, and I thought that was a good thing,” Rosenthal said. “People with MS, we have to pee a lot, so I get up to go pee and I come back and him and my wife Christie are crying. I didn’t know this doctor at all and him and Christie are crying – it scared me.
“He said, ‘I don’t think you completely understand what I’m telling you. You can no longer get the shot because it won’t help you. It’s not that you don’t need it, but you’re progressive now.’”
Rosenthal figured he really didn’t know the types of MS, but he did realize it was getting worse as every day goes by.
The doctor told him he needed to come up with a “2 & 5” plan. “He said, ‘Within 2 years you will be permanently in a wheelchair. Within 5 years, your arms, and everything’s going to keep getting worse, spreading up and down your spine and you’re going downhill fast.’ And to be honest with you, I didn’t hear the rest of what he said. I went into mute.”
The reality and severity of his condition and its potential progression hit him hard that day.
“That evening I went in the backyard and I was fighting with God,” he said. “I am religious, and I was going, ‘Why me, God?’ I had no hope, and to be quite honest with you, I thought about shooting myself.”
He said he hated the prospect of anybody watching him go steadily downhill, or end up in a nursing home. The future looked bleak.
“While I was talking to God, I kind of thought to myself, ‘Do you believe God can do anything?’ Well yeah, I believe God can do anything. But I don’t think he’s going to fix this. This is MS – this is impossible.”
But then he reflected back on examples of his own kids overcoming serious medical issues over the years and turning out fine, and his own battle at age 19 with Marfan Syndrome, which had made him very weak, but is now managed to the point where you would never know he had it.
He thought if God had gotten him through all that, why couldn’t he do this?
“And I kind of almost put God to the test – God I need you! Do something! I don’t know what else to do,” Rosenthal said.
It was just two days later that a woman named Erika Grant came into his life and gave him hope. Rosenthal heard about how she had gone to Russia and had some experimental treatment done, and it halted her progression of MS.
He was skeptical at first – “You can’t fix MS – that’s crazy!”
But his curiosity piqued, he “stalked” her on Facebook to find out as much as he could about her story. She had been in a wheelchair, and she could stand up and only walk about two feet. She could no longer play the piano or really move her fingers much.
“When I first talked to her she had only been home [after the treatment] for 3 months, and she was already no longer in a wheelchair; she played a song on the piano, which I thought was amazing knowing she couldn’t do it, and I became friends with her,” he said. “And she said, ‘Mark, I want to help you learn about HSCT, and I want to help you get on the list, and show you how to do it.’ And I was still skeptical. I was tired of hearing, ‘You can cure MS if you buy this or do that.’”
He kept doing more and more research, finding HSCT clinical trials in Chicago where doctors were claiming a 95% success rate in stopping the progression of MS. This became his goal – getting this treatment to stop the progression in his body.
“I’ll never get any worse. I can still do some things now, and if I never get any worse, I’m happy here,” he told himself.
He did apply to be a part of the clinical trials in Chicago, but was quickly told he wasn’t the right fit for their trials, which were looking for very specific conditions. The potential timetable of someone with his condition being accepted for those trials was about 3 years.
“I didn’t have that. I was almost devastated with that,” he said.
He applied to experimental HSCT programs in Russia, Mexico, Israel and nine countries total. Mexico was the first one that said they’d put him on the list, which happened last August.
• Thoughts or comments? Please visit this new thread: Mark Rosenthal begins HSCT treatment next week
Fund-raising challenge
Once on the list, he knew it was still going to be several months before he could begin treatment. Then came the rude awakening about how much it would cost. It was $49,500 at the time, and increased to $54,500 on Jan. 1. That fee would be due up front, and of course insurance isn’t going to pay for any of it (experimental treatment in a foreign country? Yeah, right).
“I had only raised about $13,000 when they told me the price was going up $5,000. And I was devastated. I probably need around $60,000,” he thought, figuring in not only the $54,500 due to the clinic but other associated medical and travel costs.
“Which seems impossible. I know very few people that ever raised $60,000. You can look on GoFundMe – unless you’re a dying kid with cancer or a soldier with some story on the news, you just don’t raise a lot of money,” Rosenthal said. “I went back to God, ‘God, you showed me the way, but if this is really you God, I need your help.”
He started with a video asking people for help. “I actually had made three videos, but I deleted the first three because I didn’t want anybody to see me crying and getting upset,” he said. “I had an ego. I thought I was Superman. And I didn’t want anybody to know what had become of me and how bad it was. MS is the kind of disease you can almost hide from people. You can’t look at me and tell I have MS.”
But you can’t always hide it. People with MS have a hard time doing things like eating, using the restroom, and even thinking.
“We have brain farts. Some days I don’t remember my wife’s name. There’s some days I don’t want to get out of bed, he said. “I cannot get hot – if I get hot I’m like Jell-O, so I’m constantly staying cold (he wears an “ice vest” to help him stay cool). I can’t overdo my body. If I was to do something really hard for 10 minutes, I’m going to pay for it for the next 6 hours.”
It also forced him to pull back on not only working, but his frequent contributions to threads on Insurance Forums. “I was a good salesman. I was a good IMO. I recruited lots of people and I was on fire,” he said. But the progressing symptoms forced him to sort of quietly fade away.
“I just kind of snuck out of the picture. Even on Insurance Forums – I guess people wondered, ‘where’d Mark go?’ I didn’t want anybody to see me weak or brain fog or looking like an idiot – I had to kind of sneak away from a lot of things in life.”
Rosenthal didn’t want to tell anybody unless he thought he had a chance of getting better instead of worse. But if he needed people to help him, they had to understand why he really needed the help.
“Look God, I’m willing to do whatever it takes,” he said. “I’ll humble myself, I’ll let people see how weak I am – which is hard to do.”
Progression sucks. But money needed to be raised – and fast.
Starting with a video led to people sending in money to get him started down the path to $60,000. The GoFundMe campaign was started, and fund-raising events were scheduled.
“We’ve had a lot of successful events – everything from yard sales to auctions to prom night for adults,” he said. “My local community in Griffin really came together.”
The owner of three McDonald’s restaurants in Griffin came to him wanting to help, and held community “spirit” nights that raised over $1,000 for him.
By the way, his friend Erika attended the first McDonald’s event in a wheelchair, walking occasionally with the help of a walker. She also attended a McDonald’s event just a few weeks ago in March, where her progress after the HSCT treatment was on full display. “This time she came in running and doing exercise, and me and everybody at McDonald’s cried,” Rosenthal said. “We couldn’t believe the woman we saw with that walker was running.”
Rosenthal has done a lot for his community in the form of volunteering for various causes, and now it was the community’s turn to help him. And the same thing happened with another community he has contributed to – Insurance Forums. Members raised over $6,000 for Rosenthal.
“Let me tell you, two or three of them were my competition. They were IMOs of what I used to do. They came and helped me. And I was so blown away by, you know – I was their competition and they couldn’t wait to help me. Ain’t that crazy? I was blown away!”
He stressed he wanted to be sure to thank Insurance Forums members for all their support. “I can tell you, people might say, ‘Oh, they’re just a bunch of old people arguing all the time! No they’re not! They love people; they care about people,” Rosenthal said. “You better be proud of Insurance Forums. It’s amazing.”
Insurance Forums member David Duford (Rearden) recently announced he is donating profits from the first month of his new book’s sales to Rosenthal, and is closing in on being able to present him with a $1,000 check.
Deadline approaching
While the fund-raising was coming along slow and steady, there was also a hard and fast deadline approaching for when the clinic in Mexico required its fee.
“I was about $16,000 short, and I had to give them $54,500 by April 10. I didn’t have it,” he said.
The financial difficulties as a result of his MS started years ago. He had already maxed out credit cards and taken a loan. Right in the midst of all this, his stepmom went into hospice care. “I couldn’t really fund-raise and do what I wanted to do. I was miserable dealing with that,” he said.
If he didn’t make the payment by April 10 in advance of his treatment starting April 24, his spot would be given to somebody else. “They are now getting over 60 apps a day coming in asking for treatment. So I knew I’d be at the back of the list,” he said.
Rosenthal, among his many interests, ran a bunch of garage sale groups in his community. As soon as those groups heard he was up against a serious deadline, a benefit garage sale was quickly organized.
“And here I am with my stepmom dying, and somebody keeps calling me – I’m like damn, I’m with her! Quit calling me!”
He finally relented and answered, and it was the organizer of the garage sale. “She said, Mark, all I want you to do is look at your GoFundMe page.” In just two hours, that garage sale had raised $16,000. He had hit his goal, and could make the payment to the clinic.
“I was just blown away,” he said. “I was also able to tell my dying stepmom, ‘Look, we did it!’”
On GoFundMe and Facebook he proudly posted the receipt from paying the $54,500 to the clinic.
“A lot of this is just overwhelming. I never thought we’d raise the $60,000 to do the treatment, and all I was focused on – if I get this treatment, I don’t care about anything else in life to be honest with you, just as long as they fix me.”
• Thoughts or comments? Please visit this new thread: Mark Rosenthal begins HSCT treatment next week
The treatment
MS is an autoimmune disease where a person’s immune system attacks itself. In 2013, about 2.3 million people worldwide had MS and about 20,000 died from it.
Hematopoietic Stem Cell Transplantation (HSCT) is a form of immune suppression but unlike standard immune-based drugs, it is designed to reset rather than suppress the immune system.
“I’ve had a lot of people say, well isn’t HSCT experimental? Well no, not to us. We call it a cure. Because if it stops your progression and you’re no longer getting any worse, we call it a cure,” he said.
He and his wife will fly to Mexico on April 24, and he’ll be there for at least 28 days if there are no complications. Rosenthal said he and his wife plan to take videos and post to Facebook to update people every step of the way.
“The first thing they do is they give you a special kind of chemo. Most chemo is designed to target cancer cells; this chemo is designed to kill your immune system, so you’re on the verge of death, I almost want to say,” Rosenthal said.
Before you do that chemo, they harvest your stem cells. Rosenthal says they give him a drug that gives you more stem cells than you normally would have and then they harvest those stem cells. “Even with MS, there’s nothing wrong with my stem cells. So they can harvest them. So after the chemo and they see you have no immune system, you get your stem cells back,” he said.
That’s a nine-day isolation period where no other humans are allowed to be with you – not the doctors, not the nurse – you cook your own meals they have preapproved.
Rosenthal believes HSCT will stop 95% of the people that have MS progression in its tracks. He says there are 91 people on his Facebook page that have had HSCT, and the treatment stopped progression in every one of them. “But I won’t just come home and say, hey, you’re cured. I’ll have to exercise every day, I’ll have to get five more transfusions of a high-dollar drug every two months; I won’t return to work anytime soon.”
Long recovery
When he flies back from Mexico he’ll have to wear a mask on the plane and will likely be bald from the chemo. “You’re going to think I’m a terrorist,” he joked, adding that losing his hair is the least of his concerns.
“You can take all the hair on my head and my body, and as long as I’m alive – I don’t care!”
Coming home after the treatment has required a bunch of work and sacrifices up front, and his home needed plenty of preparation to be ready and safe for him upon his return.
“When I come back I can’t have any infections – I have to be infection-free until my immune system comes back,” he said. “I’ll probably be a little paranoid when I come home.”
Of course that means isolation – on average the “safe zone” for being around healthy people is 3 months. He won’t be able to be around his kids for at least a month after he returns on top of the 28 days in Mexico. His wife – who will be his caregiver when he gets back to the house – will have to wear a mask for the first couple of months.
He has to give up his dogs; have some pre-emptive dental work done. And because they are “resetting” his immune system, he’ll eventually have to retake every vaccination he’s ever had all over again.
But he does think he’ll have an advantage in his recovery, because he is younger than the average person who undergoes HSCT. “I’m 37 years old and they’re usually over 50 before they can do it or have the money to do it,” he said. “I’m hoping to be the best one yet to come back and get better faster than anyone else.”
Expenses keep stacking up
Just because he raised enough to pay for the treatment doesn’t mean his financial concerns are behind him – far from it, in fact.
“God, the bills just don’t stop! I don’t want to sound ungrateful for the money I’ve already gotten because that’s a miracle, but I will need more,” he said. “So if people want to help with the ‘when I come home’ part of it, I need all the help I can get.”
He noted he’s pretty much done in the insurance business for a while, and has been for about the past year. He does have some residual income, and was recently approved to begin receiving SSDI benefits. But the credit card debt has already been racked up, and more expenses are on the horizon.
People can still help by visiting www.SaveMarkRosenthal.com.
Hopeful future
The money problems are real, but so is Rosenthal’s hope for beating MS. His future is looking much brighter than it was a year ago.
“Here I was, to be honest with you, thinking about shooting myself and giving up all hope to here’s what you need to do, and fighting to do it,” he said. “Having that done is a miracle.” He said he figures there are close to 8,000 people who have helped him in this fight, and he now feels a bit like an “investment” to those people.
“I want you to know that I’m going to fight like hell. I appreciate what people have done for me.”
When he comes back and recovers, he has vowed to “pay it forward” by helping other people with MS and fighting for the U.S. to embrace the potential of HSCT treatment and get it past clinical trials.
“Use me as an example. Here I am with very progressive MS, and they’re going to stop it? That sounds impossible. If it will work for me, it will work for anybody,” Rosenthal said.
“All this has been a miracle. We have done the impossible already,” he said. “We’ve still got a big fight coming on, but I’m ready. I’ve got my hope back. I’ve put everything I have into this.”
Brian Anderson is the Executive Editor of Insurance Forums.
See also:
- New book aiming to help create top-producing Final Expense agents will also benefit Mark Rosenthal
- SaveMarkRosenthal.com
- Mark Rosenthal’s HSCT Treatment on Fox 5 Atlanta News
Related threads:
