YNS Live with NFL Thread PIVOT Paul Frase and Alison Rockett

Listen to a new episode of YNS Live with NFL Thread recorded live on Fireside with hosts Juliet Hahn and Cynthia Zordich featuring special guests Paul Frase and Alison Rockett.

Paul Frase and Alison Rockett had everything—Paul was an NFL defensive lineman; Alison was an assistant manager for Guns N’ Roses and a personal assistant to fashion design mogul Max Azria, founder of BCBG.

Their first child, Joshua, was born with a muscular disorder called myotubular myopathy (MTM). The doctors would not give him more than 24 hours to live. 

Alison became Joshua’s advocate, and eventually the patient advocate for a whole community. 

Alison taught herself how to keep her son alive and had to resuscitate him numerous times. Before Joshua had his first birthday, Alison and her husband, Paul, started a foundation that would one day find the cure for their son’s disease. Knowing nothing about scientific research for a rare orphan disease, Alison educated herself and trusted her instincts, and when she received a vision of handing a large check to a renowned researcher, she chased that vision with relentless passion until its fruition.

Alison has since been published in Human Gene Therapy and was featured in the MIT Technology Review. Alison has forged relationships with MDA, NIH, NORD and Global Genes during the Joshua Frase Foundation’s quest for a cure for MTM. Paul and the family were featured in USA Today during the week of Super Bowl 32, when he was a member of the Green Bay Packers squad.

You can find more on their Website.

 

Remarkable Quotes

 

“I am the woman I am because my son lived, and I mean that wholeheartedly. If God gave me the choice today not to have lived that journey or to do it again, I would do it again, because truly, the joy outweighed the pain.”

 

“This book is Joshua's story. It’s a story about inspiration and hope and love. That's what Joshua is. A lot of people couldn't put the book down. They read it in one sitting.”

Sponsor

 

The YNS Live With NFL Thread Super Bowl Experience is sponsored by Shutterstock Editorial.  Wherever you go - Shutterstock is there to capture it!

 

Contact Shutterstock at [email protected] and take the field with Shutterstock’s award-winning photography superstars.

 

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Transcript:​​

00:00:00
Created live on Fireside. So I'm just gonna. I'm gonna quickly just introduce yns live with NFL thread here live on Fireside. Wherever you guys are listening, whether you're on LinkedIn, whether you are on YouTube, whether you're here listening to a repeat, this is another one of our wonderful shows. Yns live with NFL thread pivot.

00:00:20
We are super excited to introduce Paul Frase and Alison. Rock it. Oh, Cynthia, I did such a good job. That knocked her phone right over. I was sending Alison.

00:00:38
I bet she doesn't. Tell her to hit the four squares at the top. Yep. Tell her to hit the four squares at the top. Okay.

00:00:47
Because then I bet that will help a little bit.

00:00:55
So welcome, guys. You know that Cynthia and I are going to be at the hall of fame. We're going to be broadcasting live, which is going to be really exciting. So don't forget to, again, tune into either NFL thread. You can find NFL thread on all of the socials, or you can find myself, I am Juliet Hahn on all the socials.

00:01:12
And again, we're really excited because these are the kind of stories that you guys don't hear. Know, there's certain communities that hear these stories. The pivots, the. You know, when there's an NFL player or a celebrity or a professional athlete, a lot of times there's an image that people think, and they don't really think about life. And life happens to everyone.

00:01:38
We all have our traumas. We all have her trials. We all have things that happen. And to bring these stories to the forefront is what's so important, because it's what connects us. Stories connect us.

00:01:48
And the more that, you know, with Cynthia and I, bringing these stories to the forefront, Paul, and know, sharing their story, it just helps people. It helps people to also realize that we're all more alike than we want to. I know. We're waiting for Alison. Do you want me to keep.

00:02:08
Because, you know, I can just sit there and talk all day long. Yeah. No, I love it. And thank you. I appreciate it.

00:02:12
Because actually, since my tumble, I'm only seeing you. I'm not seeing anything else. And I'm seeing all the. There you are. There's Paul.

00:02:20
Okay. And if you could. Go ahead. I sent Alison several invitations, but maybe if you send her one, I told her to hit the four squares. Okay.

00:02:30
I'm going to. Hold on 1 second. I'm going to invite. There we go. Okay.

00:02:37
So I might get her on early. Yep. And we can say hi to Paul. Hi, Paul. Hey, one thing you know, life happens to superstars or NFL players.

00:02:53
I remember before Joshua, our son, was born and life happened to know, our storied life came to an abrupt halt. I remember meeting Terry Hoag and his son that had spina bifida out of a ski charity. We were raising a bunch of money for Doug betters out in big Sky, Montana. And I remember that little boy that had spina bifida was know sledding on a topogan. And it was just amazing to see how Terry and his family adjusted.

00:03:27
And they were there to raise money to fly kids from that area to Seattle. They were air flighting kids back and forth and needed.

00:03:42
Paul because Terry Hoag, we share Jimmy Solano. So Jimmy was my husband's agent and Terry's also. And I believe Jimmy Solano is his godfather. And it was so emotional and also so inspiring at the same their in the know and I just had so much respect for them and so much love for them. And now your story.

00:04:11
And then it's just incredible to have you reach out and it's incredible to think of the for I don't know about you, but for us that was the beginning. And as Michael was told by Bud Carson, he was so green at that. It wasn't the Kelly Green of the jets. No. And I was green too.

00:04:41
I was, you know, I'm not an, you know, I was looking at Kenny O'Brien's wife and all these beautiful women thinking, I don't belong in this, know, this is crazy. And I just remember the jets being like, you remember with Mark Gastono being there and it's just like New York. And it's so funny to now realize that we're all just people. We're all just families. All what I thought and worried about, that perception wasn't real.

00:05:13
It was just in everybody's head. And people are people. You had to deal with the mink coats coming out in the cold weather. And one of the Dan Alexander's wife of eleven years going to New York and saying what are you going to wear to the game?

00:05:35
One thing about really quick, the wives have it, I think tougher than the players themselves because they move the houses two times if you don't live in the city that you play in, take care of the husbands, the guys. We're out there from seven in the morning until seven at night. Most.

00:06:04
Mean. I love that you said that. But the other thing is just with Cynthia and I doing this for as long as we're doing this. And I'm so honored to be brought in to be able to share these stories and ask questions, because, again, yes, I think there's such pressure on the wives to really, you have to be a certain personality, and we talk about this a lot on the show, every kind of group that I meet, every kind of NFL player, athlete, whatever, there's some things about the personality that, you know that they can just do. You have to have a certain personality to do it.

00:06:36
But the thing that's also overlooked is not only the wives having to move all the things, but it's also about the guys careers after, if it's done. And that is not talked about enough. And Cynthia knows how much that stabs me in the heart to just some of the stories of what happens to guys afterwards. It makes me so angry with society and with the lay people like me, which Cynthia always laughs at me. But with the fans, it's like, these are real people.

00:07:02
These people think you have to think on a different level, the amount of sacrifice that you have put yourself into. And yes, you have an amazing job. Yes, you make some money more than other people, maybe in some situations, but you also have to pay taxes in every place that you play. Right. And you also have to have these other things that people don't talk about.

00:07:20
And then it's all of a sudden, like, your passion and your dream is time to go because of age. So it's society saying, or your body, or it's like, no, you're just not doing it. And the mental, I don't care how strong mentally someone is that is going to mess you up. And then if you don't have the support of someone behind you or who doesn't understand or have a community behind you that protects you almost, to let you kind of unfold in that situation and find who you are, because really, it's like a couple different identities that you have to have. Those are the kind of stories that also are so close to my heart in so many different ways that it's important for this.

00:08:01
Yes, it's important for me to get Alison on the show. Absolutely. No, I invited her twice, so I don't know what's she there. I might go away, but I'm going to. So I tell her to the bell because I've done it now three times.

00:08:21
And so maybe, I don't know why she might not be getting it, but we know that that sometimes happens, that it possibly is not her. It's just possibly the signal is getting crossed. Okay, I'm going to tell her. She said her video expired, so I think that I'll just have to have her go off and then come back on. Yeah.

00:08:40
Tell her just to get out and then go to that, like, click the four things and she'll see the show there.

00:08:49
And tell her to take some deep breaths, because I know it gets stressful. I know.

00:08:56
This is a great platform. You just got to figure out how to use it for your first time. No, it is. And it's one of the things Cynthia and I go back and forth sometimes. It's like, because time is short.

00:09:07
Right. Usually for the guests. And it's like, okay, do we have you go on where we can do, like, a little rundown? That's why the green room is there. But sometimes the green room is not as similar as to this.

00:09:16
Right. It's like, okay, got in the green room, but now all of a sudden, oh, my gosh. How do you get into the things? And one of the things that Mark and Fallon have been doing is know, because this is new. It's a new app.

00:09:27
We just happen to be on it, really, at the creation of it, which is awesome and fortunate, but it's also, all of a sudden, things change, and you're like, oh, wait a second. Okay, I need a tutorial so then we can share and help the others that are doing it. And again, if you're not used to doing stuff on your phone, I can do it on my computer. That's why I have my microphone. But it's because this is what I do.

00:09:48
But sometimes it's hard to take people through that. It's like, we have to have an m one chip.

00:09:54
You're talking to a 58 year old who really could care less about technology and just plug and play, please. Right. No, 100%. Most of our guests are people that are, at a certain point, that it's like the same thing. So you're not alone there.

00:10:11
We totally get it. That's great.

00:10:17
Everything you said resonated as well earlier. And I know Alison, she's going to have a lot to say on that. You could shed a lot of light on those things. I remember I was going through a time and seeing a counselor, and I was looking at biotech companies because we knew the science behind our son's story was coming to fruition, and we knew we were going to get the opportunity to see that happen. Right.

00:10:59
I see Alison. I see her, too. Gorgeous lady. Just take a breath. You're here.

00:11:05
And now we're just going to wait for Cynthia to come back.

00:11:11
If you have a microphone somewhere. Yes.

00:11:19
So are you still on with Cynthia? Alison, you might be still on with her, so just make sure that you're not on the phone. Oh, on the Facetime phone? Yeah. Because then sometimes that will take your audio.

00:11:31
Alison, can you just do a little test? Testing, one, two. Yes. Okay. Take a breath.

00:11:38
I can't tell you this happens often, so it's not now. We're waiting for Cynthia to come back. And I'm typically tech savvy, but this app blew me away. No, I know. And, you know, they just went through some new updates.

00:11:51
And whenever that happens, sometimes it can kick us in the butt. Looks like she's back.

00:12:03
Oh, Cynthia, you're back. Okay, I see her. Yeah. Not her.

00:12:12
You know, this all can be edited, the beginning. But it's also like it's real life, right? These things happen. Oh, Cynthia, you're the big one now. I love it.

00:12:23
So I'm going to introduce again. So this is Yns Live with NFL thread pivot live here on Fireside. Whether you guys are listening live right now, whether you're on one of the stream platforms that you're seeing us, whether you're listening to this replay, one of the things that's really close to Cynthia's and I heart is bringing stories like Paul and Alison. And it's really important because stories connect us. The world is crazy.

00:12:45
Sometimes it gets crazier to the day. Sometimes we feel, but when you hear someone's story, you can feel a little bit more relatable or be like, you know what? I don't want to give that person a hard time, or I want to pause myself and just kind of appreciate what I have in life and not just be negative and think about the positive. So, Cynthia, I'm going to have you introduce Paul and Alison, but we're really excited to dive into this. And thank you, Paul and Alison, so much for being here live on Fireside.

00:13:12
Absolutely. Yes. Thank you both. I'm just so, just grateful that you reached out, especially because everything that I do is about promoting what we are all doing within the NFL community after the game, whether it's because it's a passion project, whether it's a business, whether it's something that came at you in life, which is, in your situation, a beautiful little boy. And I just feel pleased because of the history.

00:13:38
I mean, the fact that our careers were very similar from we're 87 to 98, you guys are same. Like, we started with the jets. It's, like, insane that we started in New York together and knew all the same awesome people when I look back on John Booty and Rich Miano and coach Walton and Bud Carson and Mickey Schuler and Mark Gaffino, it's just crazy to me because it was a young, like, we were so young and it was a time of our lives and we had no idea what was in front of us. So I'm excited to have you on to talk about that journey into the league, the journey out of the league and during and then what you're doing. The most important thing right now, the impact that you're making and what you're doing now because of your son.

00:14:34
So thank you so much for being here. It's an honor and a pleasure to be here. Absolutely, yes. Starting out with J-E-T-S. Jets.

00:14:43
Jets. Jets. Long time ago and Alison. A side note, Alison's father. I met Alison.

00:14:50
She was from close to close to Nassau Coliseum. And Alison's father used to get know Billy Hampton Sr. The equipment manager and the whole family. And they dined together before. And it was very interesting that everything came full circle.

00:15:17
Is that how you met because of them or at a game or how did you guys.

00:15:25
It was my third preseason, fourth preseason. I was trying to make the team and she was out in LA. Alison, tell that part of the story. I was coming in for an interview for billboard music awards, and Paul was playing pool. Him and Marvin Washington were playing pool with my brother at this hole in the wall.

00:15:50
And I ran in to say something to my brother. It was right before you even found out if you even made the team. I think you found out the next day anyway. Yeah. So it was a brief encounter, but that's where it all began.

00:16:05
And that was in Freeport, New York. I love. And then Alison, one of the things that we were touching on, and I said I would bring it back up, is what's so important about these stories is a lot of times, communities outside sports, right. They think, okay, you guys are in the NFL community, you have a privileged life. And they don't think about how life hits everyone.

00:16:28
Everyone has trauma, everyone has life. Everyone has things that happen. And bringing these stories to the forefront, I think are so important. I think what you guys are doing in the honor of your son, I think is so beautiful and love that we can do this. So I love that Cynthia started it with how you guys kind of met.

00:16:46
And so one of the other things that we touched on is really pivoting out of the league and the different things. So if you can take us through and Cynthia, stop me if I'm jumping. But I know we want to get to the book and the foundation and stuff, but I would love to know a little bit about life when Paul was in the league. How did that look for you as a spouse? Also being a career woman?

00:17:05
I mean, if you can take us through what you were, know why you were at the Billboard award? A little know touch on that. Thank you. I was in the fashion industry for some of the greatest designers. And then I landed in the music industry and worked for Guns N'Roses and then was got a job with billboard music awards, but ended up getting in an accident and did not take the job.

00:17:27
And in that interim, that's when I met know. We got married in New York on Fifth Avenue. It was a big to do. Eight months later and the headline for the New York Post says, the jets phrase, rockets to the altar. My maiden name is Rocket.

00:17:50
Oh, I love.

00:17:54
It was a fairy tale. It was living the NFL lifestyle and amazing fans in New York. And then our son was born and two and a half years into our marriage, and things changed significantly for.

00:18:15
Really, really quick. I remember even before I met Alison, I would go to the Marty Lyons foundation. He was like a make a wish foundation for the kids that were close to passing. And I remember going into the hospitals and visiting them on the holidays, and you would just mourn these kids because you knew you would not see them the next year. But when you left the hospital, you left that situation.

00:18:45
Obviously, the parents and the families were going to be going through it. But you.

00:18:53
Mean just to, just for people that are watching that don't know our story. When our son was born, we were living the off season in Dallas. And when he was born, they basically told us that he would not survive the day. He was very weak. He could not breathe on his own.

00:19:13
And we had really, truly no idea what to expect and what to do. And so during that interim, that was February 2 of 1995. Two weeks later, Paul was put on the expansion draft team list by the jets and picked up by the Jaguars. You are looking at him going, wait, you need to continue to play. We need this insurance.

00:19:41
We had no idea what we were facing. We had a medically fragile child that was not supposed to live the day. And then they gave him free weeks. And then they told us when we left the hospital at 24 days, if he makes it to his first birthday, bring him back and we'll reevaluate him. And so that's where our journey completely shifted.

00:20:03
Paul continued to play football. I don't know how we both survived with him commuting from Dallas to Jacksonville from Monday through Friday. We'd get back on a plane by back here to Dallas and Friday to Sunday night and get back on the plane again. And miraculously, our son continued to defy the ods. And that's life.

00:20:31
And NFL is just like everybody else on the outside. I think when people are looking at it from the outside in, they think, oh, it's such a tale life. And it was beautiful while it lasted, but we were dealt a very difficult deck and I don't know where you want me to continue with that. Well, if you don't mind, I was going to just jump in and ask, because again, this is why it's so important about these stories, because not only like a unit that doesn't have someone that's traveling all the time, right? I mean, it's hard enough on a family unit when you have someone where you don't know what's going to happen.

00:21:09
I mean, that's for any human. Some humans are built a little different. They can maybe handle stress, some people can't. You don't know what your ods are. So I have kind of a twofold question, Paul, for you, if you don't mind me asking.

00:21:22
When you were getting on the airplane and going to play, what was your mindset? Was an escape? Like, okay, I don't have to think and be there even though I want to be there. Or how did that kind of manifest as you were playing and where your mindset was? Joshua was born in my 8th or 9th year, 8th year, and I literally lost my fire because I had a son at home that we had to keep alive because the doctors couldn't tell us how to keep him.

00:21:59
Was. It was difficult when I was at the Jaguars for two years and we made it through and all of a sudden I get traded to Green Bay and I'm out there by myself. Alison. We chose not to bring Joshua to Green Bay because the nurse's situation would have been tough and the cold weather. So I found it very difficult to focus and make the team year after year and focus on because the NFL, they don't say it's not for long for the reason they say, yeah, you have to be focused 100%.

00:22:40
You have to fight and scratch because you know there's somebody younger, stronger, faster, gunning for your job. You're one of 240 defensive linemen in the world. It's a coveted position. And it was difficult. Yeah.

00:22:56
And then on the flip side. Go ahead. Yeah, it's so interesting and so true about the insurance, how important the insurance is, everything. And here you are playing for the benefit of your son, for the benefit of your family. So now you're playing for a huge reason and very important, but not the same reason that you were playing in the beginning of your.

00:23:27
Say. I have to interject on that. Paul Frase was used in collective bargaining agreements. For know, when we initially, early on in Paul's career, the cap, I want to say the salary cap, the limit for the insurance was a million dollars per player, per family member. Joshua rewrote the cap for the players up to 2 million and then 2.5.

00:23:56
We'd call friends every year. And he was used in collective bonding agreements in Hawaii. And to this day, that's that coverage, 2.5 million. Wow. How about that?

00:24:11
And their family. Gene Upshaw spoke preseason at Green Bay. When I was in Green Bay at a training camp, and I approached Gene after he spoke and I said, gene, we're in trouble. And he said, and I explained the situation. He says, paul, we're not going to let somebody go down, one of our own go down.

00:24:31
We're going to fix this. And to the insurance. We didn't learn about real health care until we were out of the NFL two and a half years, three years, and we lost our home health care insurance or a few years after that. So it's a difficult road to Traverse. It really is.

00:24:54
Right. I would like to say, though, and I've said it so many times, the NFL, I don't know where we'd be if we didn't have that insurance at that time. They jumped through hoops to make sure that our needs were met. And I was very close with management and NFL management for players direct. I had their cell numbers so appreciative.

00:25:22
But those things are also, again, those kind of stories. People don't know that, right? We hear the negative things. We don't hear the positive things. And that's so nice to know that they had your back.

00:25:31
It wasn't just like, no, just play your game. Yes, there's probably certain situations that that happens. But on the flip side, Alison, so you're now home alone, right. You know that you need insurance, you know that Paul needs to go to work. But how do you kind of navigate that alone?

00:25:46
It was crazy. So initially, when we got out of the hospital, we were 10 hours a night. So the nurse would come on at 10:00 at night. And so I'm home alone. I would get up in the morning and I would take over a medically fragile child, and I had no background, there was no care guidelines, very little equipment, and I think I was a zombie.

00:26:10
Pulse. When he'd come home to relieve me on Fridays, I was just not the same person. And as soon as the nurse would arrive at 10:00 at night, I'd go to the grocery store. But working with the NFL, I'd explained to them, listen, I need more help. I cannot continue to do this.

00:26:31
And then they shifted every time, trying. To meet our needs. And so it was crazy. In all honesty, I often say, I don't know how we survived, but we did. And Joshua lived an amazing lives, miraculously.

00:26:54
And when did he get the diagnosis? Oh, sorry, Cynthia. I was just going to say, when did he get the diagnosis? Like, when did you realize what his diagnosis know? In June.

00:27:03
All the players, that's their month to take their trips. And so he had had a muscle biopsy at three and a half months at Scottish Rite Hospital here in Dallas. And we took the whole family, our family, Paul's family, to Maine and had a home on the ocean. And this was June. We received a package with five pages of the textbook copied, with no cover letter, no nothing.

00:27:29
And I open it, and I proceed to read the diagnosis of our son, which left me in a fetal position, because it was pretty devastating. At that time, 50% of the children did not survive two years of age. Now, that statistic is 50% don't survive 18 months of age. And so here we were reading this, and this is June. He's going back to camp in July.

00:28:02
It was pretty devastating. Pretty devastating. So what is the diagnosis? Can you explain exactly the name? Absolutely.

00:28:11
It's called myotubular myopathy. It affects the striated muscle. So basically, during the last trimester of utero, when the nucleus travels to the outside of the muscle, the sheath of the muscle, that's where the strength develops in the child. And it's basically the last trimester. It's stunted, and they don't fully develop.

00:28:36
So I often said it was so crazy here. Paul used his muscles every day, these men that were 270 to 300 plus pounds, that were using their muscles to play this game. We had this child that was born that basically didn't fully develop in the striated muscles, and so it affected, he was not as typical as the other children. Most of these children are ventilated support right away. Joshua was, but came off, and miraculously, Joshua breathed on his own for ten years, but it affects their breathing, eating, walking.

00:29:20
Most of them are wheelchair bound. So ten years. Ten years. He breathe on his own. Joshua was with us for 5800 days.

00:29:32
He was with us for 40 days shy of his 16th birthday. Wow. An amazing kid. He was so brilliant, funny. I mean, he's this quick wit, top of the state academically.

00:29:47
Just could hold a conversation with you about anything for like an hour. He was just an amazing kid, but never asked why and never complained. Truly an exceptional child. But that also has to be the attribute to how you guys raised him, right? You raised him to know what his strengths were and that he wasn't defined by this disorder.

00:30:13
Thank you. We tried. That was our focus, to really live life to the fullest and really not allow it to define his life. And he was always so excited about what was going on with his foundation and research, and it was a dialogue that we had continual all the time. And so just an amazing kid.

00:30:38
Truly. When you decided, how did it come about? It's one thing to take care of your family, to take care of your child and keep each other afloat, but then you took it outside of that and you decided to start the foundation. When did you make that decision? Was that a family decision?

00:30:58
Did Joshua have anything to do with that decision? I had started talking with my best man in our wedding. He played in the league for four years. And then he went onto Wall street, and he was reaching out to me and saying, paul, how's it going with know Alison? How are you guys doing?

00:31:22
And he and I started talking about raising money in Wall street and had great connections. And then at the same time, Alison's telling me, you got to use your platform to raise a bunch of money. And she was already talking to some of the best doctors in the world.

00:31:51
We filed for 501 C three nonprofit status. And three weeks after his first birthday, we received our 501 designation February 26 of 1996. And a lot of the sports, the journalists were already, they started writing about Paul and the story of Joshua. People were just writing checks and sending it in. It was so touching to see what the fans were doing in honor of Joshua's life and really supporting us.

00:32:23
And that was 96. And by 97, we pulled together our first team of researchers. Very cutting edge in the field of regenerative medicine at Harvard University. And that's where we began. It's amazing.

00:32:38
It's where it's gone mean, just in talking to you, Alison, and the fact that it isn't just Joshua's diagnosis, it's other Parkinson's disease, it's other areas that your research, because of Joshua, it's impacting so many other lives. Can you share a little bit about that? Because I think so many who are impacted with these disease would love to hear this. Try to give you a Reader's digest version of 28 years. It started out as a guarded dream.

00:33:10
We really didn't know which area, but we were throwing money holding events every year in Boston. It became one of the hottest events, and we had players from all over the league, which was unusual to get any more than three or four players at an event. We had anywhere from 15 to 20 guys. So it was NFL, Wall street, music industry, and we just kept raising money. We had proof of concept in gene therapy, regenerative medicine in a mouse model less than ten years into it.

00:33:44
Two years after that, I found the only large animal model in the world, and that changed the trajectory of our research significantly. So there's really never been a cure for neuromuscular disorder in the congenital myopathy, and ours was the first. And so our work now, the platform that we developed really was a crossover. We crossed over and created, it's not a drug yet, but we created the science, and everything was in know, from biobanking to the largest data collection to the largest data to be set for FDA Ind. I just had the most amazing mentors and people that were willing to help.

00:34:32
And so it became my life's mission and work to find a cure for this disorder. That New York attitude never takes no for an answer, killing my drive. And these children, Joshua and these children became my life's mission.

00:34:54
This technology that we developed in gene therapy is cited all the time. Our work, our preclinical work is still cited continually all the time, but it is now being used for Parkinson's, cancer, other monogenic. Really, I can't even grasp it anymore because it's spiraled. That's amazing. Incredible.

00:35:21
Really, truly is amazing what Joshua's legacy is to this day. There was a company that came in, Paul and I pitched pharma in 2012. They built a company around our work, and they tore $3 billion a couple of years ago. They've gone into clinical trials. It's on clinical hold right now, but there have been several children that have been treated, 24 to date.

00:35:48
The technology is there. The science has already been proven. It needs to be perfected, but this technology is being used in cancer and in Parkinson's disease and many other disorders. That's amazing. It's been very humbling, to be honest.

00:36:05
Oh, my goodness. Right. Well, creating a legacy, it has to be everything. And continuing Joshua's beautiful name and who he was. And it sounds like he's the type of person that would want to carry on and continue to fight for the cure for others.

00:36:25
And so having you guys there doing that, I think, is, like, not. It's. It's. He's living on, and he's there, and his power is probably felt in all of your circles. It feels so good.

00:36:40
Thank you. Thank you so much. That really was truly what he was about. He wanted this. He knew that he was too old to take or receive the technology.

00:36:51
He just was out of those bounds of what the FDA implemented early on. But he wanted this cure for his peers. That was his dream. And so we're not finished. We will.

00:37:16
Just. It's really, again, you know, with your background, too, and then all of a sudden, you're in the science world and doing this because of. And whether you believe in God, the universe, what it is. Joshua was given to you guys for a reason, and you jumped in with all of you to do it. And that's what's so beautiful about this story, because other people maybe couldn't handle all the different things.

00:37:44
But sometimes I think again, and Cynthia and I talk about this, what you have to handle as an. You know, as a professional athlete spouse, there's so many things that you're juggling, and now you're adding this to your plate. Like, you clearly are someone that is gifted in many different ways and then had the support of Paul and your family, but then also had the drive of your son that was like, okay, we need to continue to do this. And I live in New York. My husband's from the Bronx, and I was in the city.

00:38:14
I've been in New York forever. I was New Jersey, which you kind of thing. So I get and understand that drive. I really do. So it's just a beautiful story.

00:38:22
And I think it's, again, why we do these stories, because it's so important. Because, again, people see you on the COVID of magazines, they see your wedding, but they don't see what's behind the scene. They don't see that you live life, real life, and more trauma than the average person. I mean, that's a lot of stuff that you guys had to juggle and handle.

00:38:44
I call it New York chutzpah. I was born in upstate New York, in Elmira, and she kind of. I can't call myself a New Yorker. Right. Really quick about the God thing or the universe.

00:39:00
Yeah. We don't believe in coincidences. And in Joshua's story, if you take the time to read it, you'll see the stars aligned over and over and over and over again. I remember three times during the 28 years Alison was just. Her gas tank was empty and there's no filling stations.

00:39:23
She was depleted.

00:39:27
She was having a yelling match with God. I can't do this. Tell me what to do. How do I keep going? And there's a movie called Lorenzo's oil.

00:39:39
I know it. And within 30 seconds, each time she had that discussion with God, within 30 seconds, she saw Lorenzo's oil on the tv. Oh, my God. Such chat. It's just amazing.

00:39:54
And we saw Lorenzo. Really big pivotal moments, right? We saw Lorenzo's oil two weeks before Joshua was born for the first time. For the first time. And that's the story about parents.

00:40:10
They want to find out the reason that their son is.

00:40:15
Parents that never take no for an.

00:40:19
You guys. And we have it going through the scroll. Anyone that can't, because I can't read the scroll right now, but this will be on broadcast. Everything you guys can find. Joshua, the foundation at Joshua.

00:40:31
And it's phrased and it's frase.org. So you guys definitely go check that out. You can learn a lot more about the foundation, but know Joshua's story and more about what's going on. Well, there's a book, right? Yes.

00:40:45
Well, that's a book. Yeah. Well, that's why I knew we were going to next. Yeah. I just want to know everything.

00:40:52
That had to be an incredible. Because I know, Paul, you had journaled back when Joshua was first born, and then you revisited some of those journals, which I think is so interesting. That's how Hemingway came up with the Movable feast. They found his journals from Paris, from the. There's nothing more raw than what you're going through at the time.

00:41:15
So I think that it had to be really interesting to incorporate that with your writings, Alison, and your knowledge and your journey. So tell us how you collaborated to make this book happen. Paul is much better at writing. Paul started writing early on. My mother kept saying, you need to write this story.

00:41:32
There's something big behind this. Joshua's life is going to make a significant change. I mean, she kept saying that I couldn't do any more than I was doing. He was journaling much longer than I was. It took me ten years to write my part.

00:41:48
I would say a good five of it. I was on a fetal position in my office on my sofa, reliving the trauma and the nightmares, the beauty and the pain with my assistant typing. Yeah, it took a lot for me to get it out. But I have to say, I was the final edits on the book, and I hadn't laughed and cried so much. It's really a beautiful story, and it's receiving a lot of awards right now.

00:42:19
But Paul was a way better journaler than I was. I have a question. What? Because journaling is so important, and when people talk about healing and the whole journey of healing, that journaling is so important, and some people will be like, journaling, whatever. Who does that?

00:42:37
What do you do? What made you decide to journal? Give us a little background on where that came from. From you? Well, you go through some intense discussions with doctors that are telling you that your son is going to die, and you're like, you know, mom is not going to let that happen, and just tell me how to keep him alive.

00:43:04
What are you talking about? And then we try to live life as normal as possible. And you have experiences as a family.

00:43:16
It's just so powerful. They affect you so powerfully. You've got to log it. You've got to write it down. And I was going to write, actually letters from a father, and I was journaling for that.

00:43:31
And then probably eight years into it, I said, no, this is Joshua's story. Alison, we need to write Joshua's story. This has got to be a story about inspiration and hope and a love. That's what Joshua is. That's what we need to tell.

00:43:46
The just, it evolved into a very sweet love story. And Joshua, a lot of people, it's brought to tears. A lot of people couldn't put the book down. They read it in one sitting. And I say, hopefully you got a couple of laughs out of it, because I remember Joshua when he was 1415 years old.

00:44:13
We discovered the office, and I would make him watch it from 830 to 930 and 930 to ten, and he would slap my leg. I'd be sitting on the bed with him and he would be laughing so hard and say, dad, dwight Schrute is an that he had his grandfather, who he never met, Alison's father. He had my dad's humor. He did. Wow.

00:44:44
Incredible. The story needed to be told, and he has a lot to offer people.

00:44:53
It's a universal story, truly. It's not just about a child with a muscle disorder. There's so many aspects of our life that we shared in this book, but it's a universal story of triumph over tragedy, and it's an encouraging piece for anybody. I just read another email today of somebody that picked up the book, and it brings me to tears sometimes to know Joshua's life still continues to touch people. I can't wait to read it.

00:45:23
I cannot wait to read. Can you share with everyone where they find it? I know people probably know, but if you can just share, because it's always nice to hear it sometimes. And I have to tell you, I'm a little bad about updating the website. The best place to get the book.

00:45:38
You can either go to Gamechanger Global and buy it direct from the publisher, or if you go on Amazon and you put in Paul Frase. Frase or Alison. Rocket one l two t's on Rocket. It'll come up. Game changer.

00:45:59
Yeah, game changer. A boy, a dog.

00:46:03
Barnes and noble vix a million. You have to order it. It's not in the stores yet, but they can get it. But Amazon will definitely. Amazon.

00:46:14
Game changer. That's beautiful. That's beautiful. I'm just so happy for you that this is a tool that will just allow you to continue talking about Joshua, continue introducing him to others and impacting know these type of stories. They touch people and you don't know how always you get those emails.

00:46:37
You do sometimes, but sometimes you don't. But even just the fact that you can say his name and tell his story and to laugh like you said, and to cry, but to have him live on, I think, has to be very rewarding for you and your entire family. So I'm glad that it was probably the hardest thing you ever did. But I'm so happy for you that you did the book, that you did, told the story, and that you're sharing the story. Thank you, Cynthia.

00:47:05
It really, truly was an amazing journey. And I say it, I think I may have said it in the know. I am the woman I am because my son lived, and I mean that wholeheartedly. If God gave me the choice today not to have lived that journey or to do it again, I would do it again, because truly, the joy outweighed the pain. And I mean that.

00:47:32
God bless. That's beautiful. And that just shows the type of people you guys are, too, though. And that's another thing with the book, with the foundation, with the show, because people are dealt the wrong hand sometimes, right? They think they're dealt the wrong hand.

00:47:49
Why me? Why is this? And there's so many lessons in tragedy, and no, tragedy is never good. I was speaking with someone the other day who had very, very tough life. Lot of trauma.

00:48:00
Lots and lots of trauma. And he always gets the question, what would you tell your younger self. And he said I would tell my younger self nothing because I wouldn't be sitting here helping and inspiring people if I didn't go through every one of those things I went through. And when I say he went through a lot of stuff and it punched me in the stomach, but in a good way because it's so true. And you think back, one of the things that Cynthia and I do and what I do in my life mission is really to share stories, because we need to look back sometimes and not be like, why did this happen to me?

00:48:36
Again, why did this happen? What it is? But think about the blessings and the learning experiences that we get out of it and who it made us, and then who are we impacting on the bigger thing? And so many people think narrative. And again, when you're going through trauma and tragedy, no, you're not thinking this way, right?

00:48:54
It's the journey that gets you there. But what you just said, Alison, is just beautiful because as a know. As a know. And Paul, when you said a doctor was like, my kid's know, he might not live the next, like, that makes me want to throw, like, I think of my three kids. And if the doctor said that to like, how do you continue to go on?

00:49:15
But it's like, how do you not continue to go on? Right. If you think about it different. So thank you so much for sharing that. There's a couple of documentaries done as well that are so powerful.

00:49:28
They are. You can find them on the website. If you go to Joshuafrays frase.org. If you go down to game changer, we're writing a book. There's two documentaries on there.

00:49:43
One has won several film festivals. It's so powerful. It's an 18 minutes short brick in the wall. And then there was a CNN headline news. It's an hour long piece, extremely well done as well.

00:49:59
So if people want to see a documentary or two that really captures our. Story really, really quick. After Joshua passed, we actually had some people say, why do you do it? Why do you continue the foundation? And first of all, we knew what was happening in science and we knew we were close.

00:50:26
But secondly, what if the mothers that are carriers who still want to have children? What about the daughters that might be carriers that might family someday? The kids, the boys in MTM's case, most are what, what can we do to enhance their know?

00:50:52
Why wouldn't. Absolutely. Go ahead. Yeah, why wouldn't you? And of course, I'm sure you're thinking that Joshua would say that.

00:51:03
Why would you stop now. We got this. Let's go. And imagine because of you guys, at some point someday when somebody is a carrier and they realize there is a solution and they don't have that plight, and even though it's a blessing, it's still something that you're like, hey, you never want anybody to hear that their child might not make it. And beating the ods is wonderful, but it's also, you just probably want to eliminate that.

00:51:33
And that's what you guys are working towards right now. And that's just a beautiful gesture to all those, to the people out there, the future generations.

00:51:43
Thank you. And I do say this, and Cynthia, I know, is going to laugh, so just watch her. But really, anytime we have a conversation with NFL community, I always say, God put your community together because of your platforms, right? So he gave you this heart that is a heart that's going to do more for people. It's not going to be a selfish heart.

00:52:05
It's not going to be. Even though people might say, oh, they have this, where does it go? The NFL community is one of the most generous, warm, loving community people that I have met. And I say to Cynthia every single time, there's so much love and so much giving that people don't. They have no idea.

00:52:27
No idea. That was so well said and I will agree with you 100%. It's a very small community still to this day, 30 years later, I mean, I don't know how long it has been since you played ball. I mean, we have friends all over the country that still. How's the foundation?

00:52:48
How are things gone? It was so beautiful how they all just stepped up and even to this day, they're still involved in supporting us. Fantastic. I love it. I know, it makes me so proud.

00:53:01
And that's why I love pivot. That's why, you know, thread and talking with Juliet, because Juliet does bring this unique perspective because she is so curious about the lives of others, the lives of all. But then when you get specific with the NFL, she just loves the fact that every single time we have conversations, she is floored by the compassion, the service heart, the drive and the know behind the NFL families. And it makes me proud, like every time. And I'm so proud to share your story now.

00:53:36
And we will get very busy sharing your story. The foundation, the book and anything that we can do. We do events throughout the year. And if you ever feel like you want to present a few books to display, if you ever feel that you want to speak, there's always opportunity and we want to help you in your mission to spread the word. Thank you.

00:53:59
I will take you up on that. Cynthia? Yeah. I feel like my focus now is to share the story. Still looking for support for the foundation.

00:54:10
Please donate.org. It's a know. As we've said, it's a beautiful story that needs to be shared and we will continue to do that and push this research forward so it is finished until it is done. Exactly. I love it.

00:54:26
God bless. Awesome. Yes. Thank you guys. Yeah.

00:54:30
Thank you so much. And do you guys have any closing remarks?

00:54:36
This has been a wonderful experience and I love what you guys are doing. Thank you so much for the platform. Just keep sharing that hope, that love, and that inspiration. And there's so many stories, there's so many good things that are happening and keep digging those up and sharing them. And we really appreciate the opportunity.

00:54:58
Thank you, guys. Yes, thank you, Cynthia. Enjoy it for your time today. Absolutely. Thank you so much.

00:55:03
You guys. You know what to do. I say this every single time. You might have heard this story and we're like, oh, that's great. Love the story.

00:55:08
But you don't know who needs to hear this. You need to share this. This is going to be going out on all the podcast players. You might be listening to this on one of the podcast players. You might be seeing it on YouTube, you might be seeing it on another platform.

00:55:18
You might be here in fireside listening. But you need to share it because you don't know who needs to hear it. You don't know who has this, where they could actually have MTM. I'm trying to look and I can't see, but I know I was like, damn it, my glasses. I'm getting old.

00:55:36
I can't see my stupid screen. Yes. So you don't know who needs to hear about it. But so you really need to, like, share and send this out to many people. And again, thank you so much, Alison and Paul.

00:55:46
And we will see you guys. Hopefully I see you guys, you know, in person, one of these events, but we also will see you guys soon. We would welcome that. Thank you. Absolutely.

00:55:57
Thank you so much again for joining yns live. See you later, guys. Pivot. Thank you.