It’s not you, it’s me

Of all possessions a friend is the most precious.

Herodotus

ALS steals more than our loved ones body. It steals time, friendships, relationships.
I am going to forget your birthday. I will definitely forget your kids birthday. I won’t text you back in any sort of timely fashion. I will turn down your offer to hang out more often than I will accept. I will almost always be late to anything we plan to do. I bring a lot of baggage.
Most of these things were true before we were even diagnosed with ALS. I remember sitting, drunk, in the hallway in college on the phone with my best friend and her being angry at me because I was talking about some guy drama, meanwhile her grandfather had recently passed away and this was the first phone call since his funeral. Not my finest friend moment. I have a tendency to get wrapped up in myself and my life. More so now that I am a mom and a wife and a caregiver. I know my faults and I work on them but I also fall back in to old bad patterns.
It’s not that I don’t want to be there for you. I would love to be! I would love to spend a girls weekend in some warm tropical place like I see some friends on social media. I would love to do something as simple as go to dinner and linger over dessert and drinks. I get to do that sometimes, but not as often as I would like. For me to do these things, it takes a lot of planning and sometimes I just don’t have the energy to do it, or I feel guilty asking my in-laws to watch the kids for the 3rd time this week, or I can’t find a babysitter. I really really want to be a normal friend, but I can’t be one right now.
I can’t leave my kids alone with their dad. At least not Pax, the other two are pretty close to the age where they can. For me to go anywhere I have to find and pay a babysitter, or ask the in-laws to watch the crazies. If it’s an overnight trip I have to find someone who can be with Matt overnight and watch the kids. I have to find someone Matt is comfortable staying overnight. As much as he loves his parents, having them stay with him at 36 is a little demoralizing. I can’t up and leave within hours of making plans. I need at least a week notice. It’s never Matt saying I can’t do anything, it’s me saying I can’t. My kids need me, my husband needs me. I work to find a balance, but first priority is home. If Matt is having a bad day or the kids need a parent, forget it, I’m out.
I get out. I go to the gym almost every morning. I go to dinner with girlfriends. Just the other weekend I spent a night in Philly with some girlfriends and got a rude reminder that I am, in fact, 36 not 26. These excursions from the ordinary take thought and planning and a little bit of guilt. Matt tells me all the time to not feel guilty over hanging out with my friends, but I can’t escape the feeling. I know it’s only in my mind, but it feels like rubbing salt in his wound. He can’t do it but I can and that’s not fair.
Sometimes I am just too tired to meet up with you. In our house, I do the physical work. All of it except what we are fortunate to hire out. Matt got sick of my horrible house cleaning abilities so we have 2 wonderful sweet women who come clean once a week. We also have someone cut our yard during growing season which is helpful but I do miss the smell of fresh cut grass. Other than that, most of the day-to-day stuff falls to me. Dishes, laundry (except when I send it down the road to Deb and Jim!), homework, cooking, you know, the normal every day stuff that every family does. And, I’m not complaining. We are VERY fortunate that I can stay home and be here for Matt and the boys. A lot of ALS families have to work to support their loved one. It’s just sometimes overwhelming and the thought of getting dressed and finding a babysitter for a dinner out is too much for my brain to handle.
Sometimes it’s coming over to your house that I will turn down. It’s awkward to get Matt in to a lot of houses and most are not wheelchair friendly. And that’s not anyone’s fault. But Matt then feels like he’s in the way and it’s inconvenient to accommodate him, or he gets stuck in a room and feels like a burden on whomever is in the room with him. He can’t move with the party. I love my husband, I don’t want him to feel like he is hindering anyone’s good time, so we stay home. Our home is literally made for him and his wheelchair and it is where he is most comfortable. All his stuff is here in case anything comes up. He doesn’t ever feel in the way around here. He can move freely throughout the house or wherever anyone wants to go. He doesn’t feel like a bother. So it’s not that I don’t want to come over, it’s just I can’t right now. But hey, our door is always open to any friend near or far!
So, I am not a good friend. I am a loyal friend. I love my friends fiercely and will protect them to the end. I will always be willing and able to be on the phone to hear about your day, or your kids, or your problems. I will try to make time for you and to be there for you physically when it is possible, but please understand that it will not always be possible. And I know I am missing big events. God, I hate missing those moments with you. I hate missing the small events too. Please remember that I agonize over whether I can make it to you or not and it hurts me to say no.
I know there will be a day when I can be a really good friend again. When I will be able to travel to see you and spend time with you and linger over dinner and dessert. I don’t like to think of that day because in order for me to be able to be freely there for you, it means I am going to lose something even more precious than our friendship.

Does Wonderwoman know she’s Super?

“Love is the only engine of survival.”

Leonard Cohen

People tell me they admire me. It’s a very weird experience for me. I am not comfortable with it. I’m not a particularly admirable person. I’m really quite average. I was thrust into an extraordinary situation and am dealing the best way I know how. So when a friend tells me that I “inspire” them, I really am baffled.
I get that our life seems tough to a lot of people. And it is tough. Living with ALS is no walk in the park. There are hopeless days. Days that are filled with tears and anger. Days where nothing goes right. But those types of days happen to EVERYONE. To differing degrees, but I can’t name a single person who is in a constant state of awesomeness. Everybody gets through those icky days a different way. I personally put my head down and literally push my family over the finish line. And then usually find a stash of chocolate somewhere before going to bed. To each their own.
Our life is extraordinary as well. Because of ALS we have had some amazing things happen that would never have happened otherwise. Flying to Colorado and Arizona to speak at events. Meeting the President and Vice President of the United States. Cultivating friendships with some of the top lawmakers of this country. I understand to the vast majority of America that these are not common things. I understand it would not have happened had Matt not been Matt and gotten ALS.

Ziplining at The Broadmoor in Colorado

Maybe that is why people tell me I am an inspiration. Matt has this intangible thing that elevates him above the average human being. People gravitate towards him. They trust him immediately and tell him some of their life stories within minutes of meeting him. He was telling me the other day that on his bus rides he used to take from our house in Richfield, MN into Minneapolis for work, there was one guy who was telling him he had completely ruined his life because he used to beat his wife. Not sure about you, but not a conversation I would have with a stranger on my morning commute. And that’s not the first time something like that has happened to him. It still happens to him. Sometimes I drop him off and go park the van and by the time I get back he is sitting with someone who we don’t know that is telling them about their fears for life. It really is crazy and I wouldn’t believe it if I hadn’t seen it for myself numerous times. Maybe some of his intangible has rubbed off on me over the years.
I have the opposite effect for the most part. I am firmly in the RBF category – Resting Bitch Face for those who don’t know. Some of my closest girlfriends have told me that when they first met me they thought I couldn’t stand them. It’s just my face. And I’m not an open person. I don’t radiate the light like Matt does. It’s more because I get very nervous and scared when it comes to meeting new people. I overthink and worry about first impressions, which is funny when my first impression is that of a bitch. I like to think that I am not and the people who know me can see that!

You see, I care what people think of me. At least what the people who I care about think of me. Strangers, not so much. But the people who I have in my life because I choose to have them there, their opinion of me matters a lot. For my own mental self-preservation, I can’t appear weak in front of them. A bit of my identity is wrapped up as the wife of “Matt Bellina, ALS advocate and extraordinary person”, the backbone that doesn’t ever bend. You need us in Washington tomorrow? I will figure out a way. Matt needs to meet with 4 senators this afternoon? I will walk, pregnant, around The Mall and visit the Smithsonians with our 2 kids while he does it. Want us to fly to Arizona? I will literally carry Matt onto the plane to get us there. You need our family to do something, I figure out a way to get the moving pieces lined up to make it happen. Failing to make it happen is not an option. It’s just survival.

Aside from survival, it’s love. Crazy, Stupid, Love. Isn’t there a movie about that? It’s the love I have for this man and his for me. I wouldn’t do the things I do for just anyone. I’m not that magnanimous of a person. It’s the love I have for my kids. I think most mothers would crawl across broken glass for their kids. This is a little bit the same. I want them to have the best lives possible and that means trying to keep their childhoods “normal”. It’s God’s love for us, as a couple. He put this obstacle here because he knew we would be able to scale it together. None of what I do in this ALS life is because of me. None of it is superwoman powers. I think a lot of cALS feel the same way and would tell you the same. It’s not super anything.
So, you see, it’s survival and love. I love this man, myself, my family, this life and I will help my family survive it. Although, I hope I can help them thrive, not just survive.

ALS, Risk Factors, Strategies and How We Live With Them.

If you are reading my blog then you probably already know that certain groups of people are more likely to get ALS than your average couch potato. If not, Google search ALS combined with family history, Veterans, Football players, Fire Fighters, Police, Elite Athletes, or Nice People.  Now that we are all on the same page, there are of course pressing questions about lifestyle choices if you have already been chosen for membership into the pALS club. 
I am going to go into a lengthy description for why I have made the choices I have made, but I really hope that nobody mistakes this for advice or recommendations. I am not a scientist, health care provider, nutritionist or even someone with an education in human health. Furthermore, ALS is such a heterogeneous disease it is very likely that you and I don’t share the same causal mechanisms in the unique pathologies of our illnesses. The only advice I will give is that everyone should discuss these things with  Healthcare providers. Now that we have that out of the way, here is a brief glimpse into the way I think. 

Exercise

Recumbent elliptical workout from August 29, 2019

If careers that demand fitness, and extreme fitness behaviors seem to lend themselves to more ALS diagnoses, that begs a serious question. Is exercise bad for ALS?  You can find plenty of experts who disagree with each other on Doctor Google and absolutely drive yourself crazy. The only consensus seems to be that light exercise and passive stretching is probably not harmful. 
The problem for me is that intense exertion and pushing physical boundaries is an essential part of who I am. I could limit myself and maybe prevent some harm to my body,  but in some ways I would be allowing an unhealthy atrophy to my soul. This is my priority. 
You see, I love going to the NAC and spending time with kindred spirits who understand the love of setting and achieving fitness goals. I love having my heart pounding and a burning in my arms and legs. I love when a friend sees sweat pouring down my face and into my eyes, and they come running to towel my face because they know I can’t.  I may be helping or hurting my body, but I made the choice that this is something I wouldn’t want to live without.

Diet 

Even healthy people drive themselves crazy trying to decide what they should or should not eat. There are a ton of things that could be harmful in the diet of an ALS patient. Some of the the things that have been suggested are refined sugars, GMO’s, MSG, glutamine, glutamate, aspartame, gluten, and about a million other things. You could spend every day reading the labels on everything you eat and probably still be getting something harmful. The other problem is that data seems to indicate maintaining a higher body mass index is somehow protective in ALS. The seeming opposites to conventional wisdom are absolutely maddening in this disease. 
I decided a long time ago to focus on taking in what I should eat rather than avoiding what might harm me. At the very least this has preserved my sanity. And it allows me to enjoy food. So now I just make sure I get at least 15-20 servings a day of fruits and vegetables and at least a pound of meat. I also try to get at least one fermented food or beverage to support the microbiome.  Beyond that everything is gravy.  Or pizza and fried chicken.

Supplements 

I am sure almost every ALS patient has tried a thousand different GNC pills or powders in the hopes of putting a a dent in the obdurate monster that is our disease. I am no different. I am not going to give any advice or recommendations here because I don’t know literally anything. I will say I trust my neurologist to give me a straight opinion on whatever I ask him. I also trust him to admit when he has no clue. I hope you have a similar relationship with your Healthcare provider.

Hope 

My reasons for Hope

There are a lot of ways to mentally cope with a terminal illness. Conventional wisdom would indicate that acceptance is the ultimate goal for living in peace with your illness. This is probably true. Hell,  everyone every one of us and everyone we have ever loved is going to die at some point. But even in acceptance, we have to allow for people who are born to fight. I like to think of all of this as a game that is most enjoyable when it is played to be won. That is why I get a lot of joy for all the reasons to maintain hope. Nurown works. Maybe not for everyone but we will zero in on that and soon.  Up and coming are Copper ATSM, T Regs, AT1501 and more things than I can keep track of. This tells me the game is about to get exciting. I can’t wait

Who comes first?

“Sometimes it’s the smallest decisions that can change your life forever.”

Keri Russell

When we decided to try for a second child within a year of our first, my friends in Minneapolis asked, “Why?!”. Not because they knew of Matt’s struggle but because our firstborn tends a little to what some might categorize as ‘crazy’. He crawled at 6 months, walked at 9, was high energy, and, in my humble opinion, was highly intelligent for his age. However, my response was always, “The second one can’t be any worse!” Our second came 2 weeks shy of our first’s 2nd birthday. He was a perfect scrawny thing that was opposite of his brother. He loved snuggles, being held and was thankfully a pretty chill baby. A cross country move and diagnosis later, I got it in my head we (me) really needed a third child. Like REALLY needed a third child. Matt was using a walker full time and wheelchair on longer trips. After a year of me asking (nagging constantly) Matt capitulated and let me have my way and now we have 3 handsome, perfect, rambunctious, crazy boys!
It’s a little insane to have kids in the first place when one of the parents has ALS. I completely understand couples that marry after diagnosis and still want to have a family. I also understand couples who choose not to add a little one. I am not sure why a couple would add a second, let alone a third child into the mix, but long ago I stopped trying to understand why I want what I want. A lot of times I don’t make sense even to myself. However, we found ourselves on March 4, 2017, almost 3 years post diagnosis, 5 years post preliminary, welcoming our third boy into the family.

Kip, Pax, and JP with fresh hair cuts

We went in eyes wide open. We knew that already the task of being the physical parent for the older 2 had fallen largely to me. At the same time, Matt was increasingly needing me physically. Adding a newborn was going to stretch us to our limits. Little did we know that this guy was going to enter the world and the next day be rushed to the NICU because he stopped breathing and then spend the next 18 days there. Matt was recently full time in a power chair but I would drive us back to the NICU every day and most days go back at night.
Looking back, it was a gradual entry into what has now become my daily life. Not that we still have a really sick kid, but rather trying to split myself into too many roles and then getting angry when it doesn’t go the way I want. Remember when I said ‘I don’t want to be angry anymore.’ Most times, I cause my own angry. I can admit that now, but catch me when I am angry and likely I will blame you. Matt and my mom can fully attest to this character flaw. Most of the times I feel stressed and upset are because I have in my head this image of the wife/caregiver/mom and I find myself falling short. I am fully Type-A and have a hard time letting go enough to have things any other way than what I believe is best. Instead of giving myself the grace to fall short – because everyone does – I start looking for external reasons why I am not living up to my image.
Enter ALS. It’s the perfect scapegoat, right? I mean, my life would be perfect if it weren’t for this disease. I have a gorgeous husband, healthy kids, live in a great neighborhood, have awesome friends, my list can go on. If it weren’t for ALS, I wouldn’t have to choose between taking care of my husband and taking care of my kids! And that, my friends, is the hardest part of being the mom and the caregiver. I have to choose who comes first. On a daily basis there are times I have to choose to help my husband or one of our children first. I won’t say I am gripped with fear that I will choose wrong, because to know me is to know that I can make decisions and pretty much think they are always right, but I have times where I wonder if my ‘right’ decision was actually wrong. When I have a chance to sit and think, “Does Matt feel loved?”, “How can I make Matt’s life better?”, “Today I will not get angry at Matt because it’s not his fault. Does he know I don’t blame him for all this?”, “Are the boys going to be upset because I chose Matt?”, “How long did I ask JP to wait?”, “Does Kip get so angry because I don’t love on him enough?”, “Is Pax being crazy because he needs more attention?”, “How bad am I screwing up my kids?”. The kids and Matt are equally important. The little guys might not need me in the way Matt does, but that does not lessen their need. In their brains, they need mommy. Full stop. In reality, Matt probably needs me more. They do not always understand that reasoning.
I am not going to lie. We were circling the drain. Maybe even halfway in the drain looking back. I was physically and emotionally beyond my limit. I can’t say I always made the right decision on who to help first. I really really hope I didn’t do any lasting damage to my children’s psyche but we will have to wait and find out. Matt saw and recognized my struggle better than I ever could and in his infinite wisdom found our saving grace.

Flying to Arizona

Her name is Adriele. After a couple fights, harsh words from both of us, tears and finally acceptance that getting help was not a sign of weakness in myself, I agreed to bring an au pair in to our home. (I know this is not a reality many families with ALS can afford. As I have said, we are extremely fortunate that Matt is a veteran and ALS is a service-related disease.) It might be the single most significant decision we made as a couple in our fight against ALS. Welcoming someone outside your family into your home might seem like a daunting choice but it was absolutely the right choice for us. We had a 6 month old, 4 year old and 6 year old. As I said, I was physically and emotionally unable to provide for them the way that they deserved. I have such respect and awe for single parents. It has to be the hardest thing to do. We were blessed to have Adriele in our home for 2 years – and are about to welcome our 2nd au pair in 2 weeks! Our boys love her like the family that she is to us. She was a mix between an older sister and a cousin. They tended to listen to her better than they listen to either Matt or me. She was another safe haven for them to land when Matt and I were not able to be there for them. It was also so comforting to know that our children were safe and loved if an ALS emergency came up.

Jim and Deb with the boys on Pennypack Trail

We have the added bonus that Matt’s parents decided to relocate from Massachusetts to Pennsylvania 2 years ago. By the grace of God a contract fell through on a house 3 blocks from us. Deb and Jim were able to get it before it came back on the market. We are able to walk to their house now and it is awesome for the kids. Our quality of life has gotten so much better with them living close.
I urge anyone fighting this disease, or any difficult struggle, to let the people in their life step up. Rather, let them show up. As I write this, I realize I am being a bit of a hypocrite because I don’t always take the help offered and almost never ask. If you accept the help, a neighbor bringing over food for dinner, a friend taking your kid to sports practice, an in-law doing your laundry, you are not being a nuisance. I often find myself feeling like that and say “I got it” even when I don’t. It almost goes without fail that then I find myself overwhelmed, having to choose between Matt and the boys and then getting angry at both myself and them.

At the starting line of the Philadelphia Rock ‘N Roll 1/2 Marathon surrounded by some of our NAC family and friends
L to R: Ernie Cousino, Deb, Kim Levins, Jim Worthington, Paul Stabile, Mark Masso

Accepting help is not a sign of weakness. This disease is difficult to manage on any day. When you add children in to the mix it takes on a different level of difficulty, young children especially. If you take on the role of your pALS caregiver it can be really hard to make the decision of who needs you more, your children or your person.
If you have the grace to admit that you are falling short, you don’t have to make the choice, everyone can come first. There will still be days where you find yourself lacking at both the role of parent and caregiver. There will also be days where you find you are a super hero and you did it all on your own. On the in between days you will find you have a group that loves your family and cares about you. That there are people willing to step in to the gap that this disease inevitably creates in a family. Accept those people, love those people, appreciate those people and they can make it so that there is no having to choose.

Holland Squad (my boys’ other mothers)

I Get Hate Mail?

To some this might come as a shock but I actually get quite a few hateful messages from people who are upset that I was able to get access to Nurown while others were not.

In pre-op

Here is why I don’t let it bother me and you shouldn’t either. It’s not based in rational thought and comes from a place of either suffering or ignorance. Either way, these people are in need of compassion. So why are they upset? Did they ever direct anger towards the few people who have accessed experimental treatments through the Expanded Access Program? Or against people of means who have been able to travel and access treatments in foreign countries? Of course not. In the dialogue I have had with angry people I have been able to identify a few common themes. I will share them here so it makes more sense. 

Anti Semitism

I know this is hard to believe in 2020, but the majority of angry messages I get involve some language that reveals resentment for Brainstorm simply for being an Israeli company. Sadly it is not only an issue of education. I have heard it as much from college professors as I have from uneducated social media trolls. Often they don’t even realize their own biases, and they fly into a rage when you ask them not to use hurtful and discriminatory language. This is a problem that is beyond our ability to resolve, but I think we all have an obligation to stand up against it. 

Politics

It’s no secret that there was significant opposition to the Right to Try law and there are people who were disappointed that they were not able to block passage of the law. To the credit of some of the strongest voices of opposition, many of them put the arguments behind them and have actually reached out to collaborate on ways to make the law practicable. I have tremendous respect and gratitude for these people. Unfortunately there are always spiteful people. People whose identities are so interwoven with their opinions that they view being proven wrong as an existential threat. In their fear, they lash out at anyone or anything that might put them in a position of cognitive dissonance. What can be done for these unfortunate souls who live in constant fear of diversity of thought? Love them anyway. Anger has never been a cure for fear. Keep participating in open dialogue and hope that one day we’ll all realize that we want the same thing. 

Envy

At some point every single patient or caregiver struggles with this. Early on in my disease, when I realized that I was already symptomatic too long for FDA trial participation, it seemed so unfair. I might have looked at another patient who was not diagnosed until after they watched their kids grow into adults and think, “why couldn’t that have been me?” I’m sure anyone who also wanted to access Nurown thinks it is unfair that they have to wait for now. The hardest part is, they are right. There are treatments out there that are going to be effective for people that they won’t be able to access because our system is not nimble and well financed enough to make it possible. The even harder part is that we don’t have a consensus on how to get there. It is devastating. Of course most people don’t use me as their target of resentment, but for the ones who do, I understand. I am sorry. I hope that one day we won’t have to look at each other and wonder why everyone seems to have different treatment options. We will all have the right therapy for our unique conditions. 

I want to end this on a positive note. I’m grateful that Brainstorm is doing the right thing and working with the FDA to make Nurown available for everyone. I believe their top line data will be available this year and I believe it will be overwhelmingly positive. I don’t have any information that you don’t, but based on my experience and other accounts from trial participants, this is something special. I am also really optimistic about the direction patient led organizations like IAMALS, Team Gleason, and Augie’s Quest are driving research. Precision Medicine Programs, Platform trials, and outside trial access are all about respecting you as an individual, and they are going to lead us to a better tomorrow.

It’s Going to Be OK

“She is clothed with strength and dignity, and she laughs without fear of the future.”

Proverbs 35:21

April 8, 2014…it was just a day. It was a day that had been coming for nearly 18 months. It was a day we could finally breath again. It was the day Matt was officially diagnosed with ALS. I say we could breath again because we had been holding our breath for 18 months. Hiding the inevitable from everyone except a select few and holding on to an ever slimming hope it would not be ALS. Once we got that official diagnosis it was a relief.
Two things to start off with in this first “post” from me, the wife, the caregiver, the mom. The first is, believe that I cried, yelled, denied, then cried again. A lot. About 18 months prior when the first neurologist told us it could be ALS I crawled into Matt’s lap while our 6 month old was napping and I cried. Then I called my best friend and cried some more. I got to the point where I almost couldn’t breathe. Don’t Google ALS when you get the preliminary diagnosis. Google doesn’t know anything about ALS. The second, and this is a piece of wisdom from a woman I greatly admire – Mrs. Lynne Nieto – both of you were diagnosed with ALS. It’s not just your spouse. It’s you too. Your life is about to go all kinds of haywire. There is no way to prepare for the cruelty that is ALS. But, guess what? If you make the decision to stay, you can absolutely crush this disease. By that I mean, you can live it on your own terms. Still laugh. Still love. Still have a pretty freaking great life.


Unfortunately, your spouse doesn’t have the option to “opt out” of ALS. Some spouses don’t think they can stay, for whatever their personal reasons, and they leave. For me, I didn’t have that option. If you have ever met my husband, you know he is charming, handsome, intelligent, and charismatic. He draws people to him. I was no different those 18 years ago. And I’m still not. I have loved him beyond measure for over half my life, and that love has only increased while we grew our family. When we met at the end of an aisle in 2007 we thought we were headed to a life of Naval Aviation not a life of advocacy for the terminally ill. But, this is where we find ourselves, side-by-side most of the time. Sometimes he is the one dragging me along, most of the time it’s my stubborn personality forcing us to do things that are probably beyond him. Fortunately he loves me enough to let me force things.
Since we were told it most likely was ALS, in Fall 2012, we have moved halfway across the country, had 2 more children, completely renovated our home to make it accessible, flown our family to San Diego to take our kids to DisneyLand, talked to countless members of Congress on countless trips to DC, met the President, advocated and passed The Right To Try Act, and taken our 3 kids, au pair, and 4 grandparents to the Grand Canyon. In between all the big events, we taught our kids to walk, ride their 2-wheelers, been to family weddings and funerals, made new friends and said goodbye to others, gone to the beach, had a newborn in the NICU for 18 days and lived a normal suburban reality – just with a guy in a wheelchair. Pretty. Freaking. Great. Life.

Our crazy crew at Hermit’s Rest at the Grand Canyon


Fortunately, I made the decision early on to let my stubborn side reign. Although ALS is a large part of our life, it is not OUR LIFE. I had a very clear picture of my life from an early age. I was that girl that dreamed of the white picket fence, 2.5 kids, family dog and a ruggedly handsome husband. I am living a different version of my dream. I have a natural wood picket fence, 3 kids, crazy dog and a ruggedly handsome husband with ALS. Some days this dream can feel more like a nightmare. I don’t want to paint a rose-colored-glasses view for anyone. There are days when I fall exhausted in to bed, not quite sure of the last time I showered or brushed my teeth, with the sink full of dirty dishes, piles of dirty laundry (maybe a wet load in the washer?), next to a husband I know will wake me up at least 4 times to rearrange him throughout the night with tears behind my eyes and a lump in my throat. On those days I have those thoughts – “I can’t do this anymore.” “I am so tired of this crap.” “I just want to walk away.” “I don’t want to be angry anymore.” And on those nights, before I go to sleep, I try really hard to tell myself – and believe – that tomorrow will be better. I can tell you that there has never been a morning where I woke up that it was not better. There has yet to be a morning in all those 2,113 days that I woke up and have thought “It’s not going to be OK.” That is what I want to leave to anyone reading this. Everyone has their own struggles which are just as real as anything anyone else is going through. Don’t diminish your own struggles. Know, either as you go to bed after an awful day or wake up to a new hardship, it’s going to be OK. You got this. If you don’t believe you do, there is someone in your life who does believe in you. And if you still don’t believe you do, listen to this bit of motivation Matt and I both turn to on those exhausting days:

Keep Showing Up • Team Fearless

A Little Background

“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.”

C.S. Lewis

By Matt Bellina |


Matt Bellina is a father, Navy Veteran, and patient advocate who is receiving an experimental treatment under the new Federal Right to Try law.


Caitlin Bellina and Jim Worthington stand with Matt Bellina for the National Anthem before The 2017 Rock ‘n’ Roll Philadelphia Half Marathon | Photo by Helga Proudfoot

Over ten years ago, I was training to become a Naval Aviator when my body started slowly failing. By the time I earned my wings of gold, one physician estimated about a third of my motor neurons had already died.

ALS is a spectrum of diseases that result in the degeneration of upper and lower motor neurons, causing dementia in some cases and eventual death in all patients. The literature varies, but roughly ten percent of cases are genetically inherited, and even within that subgroup, there are at least forty separate genetic mutations.

When I was formally diagnosed in the spring of 2014, I had already been symptomatic too long to qualify for a single FDA-registered clinical trial. There were a few new treatments that I thought looked especially promising, but I knew they were likely too early in the development pipeline to be available in my lifetime.

So I did what any rational person would do: I started the process of begging companies to let me try their experimental treatments outside of the trial.

One treatment that excited me was Copper ATSM. Another was the widely-known NurOwn from Brainstorm Therapeutics. These therapies were particularly interesting to me because both sought to address broad issues in the pathology of the disease.

I was also very interested in a precision medicine program that was being conducted by a nonprofit with proceeds from the historic Ice Bucket Challenge. I strongly encourage you to read about the ALS Therapy Development Institute’s Precision Medicine Program at ALS.net. It is a groundbreaking initiative that allows researchers to interface with patients while studying their actual cells and DNA profile all while employing cutting edge digital techniques for measuring disease progression. This is the absolute tip of the spear in individualized medicine.

Yiding Yan tests a sample at the ALS Therapy Development Lab in Cambridge, MA | Photo by ALSTDI

Unfortunately, these therapies could not be made available under the FDA’s so-called “expanded access” pathway.

Thus began my involvement in patient advocacy. I went looking for answers and I found them from a woman in Wisconsin and a small boy in Indiana.

In Wisconsin, an ALS patient named Trickett Wendler had already keyed in on the same issues and was meeting with Senator Ron Johnson to create a solution for patients with life-threatening illnesses. It would be called the Right to Try Act and would give patients and physicians the ability to work with drug companies without having to petition the FDA. Trickett passed away shortly after beginning her lobbying efforts.

Her death deeply impacted my family, so much that we traveled to Washington DC to see if we could help further the cause. It was there that I met a young boy named Jordan McLinn who was battling Duchenne Muscular Dystrophy. Jordan had already succeeded in convincing then-Governor Mike Pence to sign the state version of Right to Try in Indiana in 2015.

At about the same time, my friend and leader in the fitness industry, Jim Worthington, encouraged me to make sure that Right to Try would become a federal law. With the leadership already being provided by the Goldwater Institute and patients across the nation, we knew the stars were aligned.

On May 30th, 2018 we were present when President Trump signed Right to Try into federal law, officially amending the Food, Drugs and Cosmetics Act. There are so many people that should be given credit for this tremendous achievement, but there is not enough space here to name them all. Thankfully everyone involved in this movement is more interested in results than getting credit and they all know who they are.

Patients, caretakers, and advocates gather around Jordan McLinn after the federal Right To Try signing ceremony | Photo by The White House

I will say I was glad to have my strong wife Caitlin by my side because none of it would have happened without her. After the passage of Right to Try, I knew the work was just beginning since most companies are cautious about changes in the drug development process, but Caitlin gave me confidence that we could achieve anything.

I will always be grateful that Brainstorm had the courage to step up and set the example for how the law can be successful.

On the morning of December 27th, 2018, American Airlines flight 1776 flew from Boston to Philadelphia with a small, temperature-controlled box containing my personal mesenchymal stem cells in the form of the treatment known as Nurown. Jordan McLinn and his mother Laura flew in from Indiana for the occasion. I was thrilled to see he is still doing well on the experimental treatment he receives for his disease. My infusion was benign and I was sent home twenty four hours later.

Within two weeks, I felt the overwhelming urge to stand up out of my wheelchair, so my family propped me up against the kitchen counter and I stood!

Since then I have had six injections and I have regained the ability to stand on my own without assistance. My lung capacity is 37% higher than it was before my first injection, so I no longer need the assistance of a breathing machine. I have gained enough mobility in my arms to scratch my face and even take my glasses off. All of these are improvements from where I was before the treatment.




I am extremely grateful and excited about my treatment, but I am heartbroken that I am the only person with ALS to receive access outside of the trial at this point.

Our work is just beginning. I feel like my gains are a small but significant victory in the war against heterogeneous diseases. People are receiving treatments for other life-threatening illnesses through the Right to Try law, but many companies have not been educated on how the law works and most are still timid about using it.

I see our role now as fighting misinformation being spread by people who stood to profit off the old paradigm. We need to help researchers and manufacturers to see opportunity in the bodily autonomy of well-informed people battling terminal illnesses.

For me, Right to Try is as much about moving the needle towards civil liberties as streamlining medical research. Today I am a living example of how both are beneficial, and I want so many more people to share in the experience.

Subscribe to my blog!