By Jennifer Ersalesi
Photo credits: Shelly Stellato
As someone who has made a career in the field of communications, Michele (Shelly) Stellato (formerly McKenna) never imagined that her ability to be a leader in public relations would assist her in becoming one of the biggest advocates for a disease she now understands all too well. This is Rutherford spoke with Shelly, a young, positive, focused young woman, who, along with her friends and family, hopes that the residents of her hometown might be able to join her in a fight that is too challenging to fight on her own.
TIR: You grew up in Rutherford and enjoyed living in such a close community. Where did you attend school?
Shelly Stellato: I grew up in Rutherford. I went to Pierrepont school and then I graduated from Rutheford High School in 2006. After high school, I attended Ramapo College in Mahwah. I enjoyed playing volleyball in high school and college.
TIR: As a career-driven, physically active, young woman you were very surprised when you started exhibiting odd symptoms such as difficulty typing and not being able to serve a volleyball or run as you always had. Eventually, you also experienced twitching and about six months later, in June 2020, you were diagnosed with ALS-Amyotrophic lateral sclerosis (often referred to as Lou Gehrig’s disease). Tell us more about what lead to your diagnosis.
SS: I got diagnosed super quick. Some people go years without a diagnosis. I was on it and I wanted to know exactly what was wrong and I was very persistent. After about 6 months of trying to figure it out. I was in MRI machines so many times. Doctors checked everything and everything seemed to be fine. My bloodwork came back all totally normal. I was thinking I was vitamin deficient, had Lyme’s disease, maybe cancer, but all of those would have been a cakewalk compared to what I am going through now. One doctor told me he could rule out ALS because I was not an old man, but it was a scary idea. When I took the test he couldn’t tell me I had ALS, but he couldn’t tell me I didn’t. My doctor appointments were getting canceled and I was not allowed to bring my husband. At that point, people weren’t even leaving their homes and I was going to countless doctor visits.
I had a test called an EMG (electromyography) which was like an acupuncture needle that they put into my muscles and sent electricity through my body. I went through four of these grueling tests. Then I went to Columbia University Medical Center where they did an in-depth EMG, which included even the center of my hand and my tongue.
TIR: What did you know about ALS before you were diagnosed?
SS: I knew ALS wasn’t good. I did the Ice Bucket Challenge back in 2014. I have photos and videos on Facebook to prove it. I knew about Lou Gehrig. After my diagnosis, I went through a process of shock, anger, confusion, and doubt. I have friends and family who just wanted me to get more opinions, but I had gotten so many. It was too hard to believe it was true.
What brought it to light was when I went to my regular doctor appointments at the Columbia ALS clinic and they asked a series of questions, like are you able to walk? Are you able to get dressed by yourself? These appointments are on zoom and they ask all these scary questions about whether I can stand, roll over in bed...it is like it is unraveling in front of me. Every three months I see a PT, OT, Respiratory Specialist, and Nutritionist. I have access to amazing doctors, which is great, but I get so scared when they test my breathing. I worry I won’t be able to breathe and I will be on a ventilator. The worst part is that ALS patients are not on Earth long enough to tell their stories. Families are devastated at the end and don’t want to talk about it. It is hard to really think about and understand what to expect. I am very functional and I work full time. If you met me, you probably would not know anything is wrong with me. It is good that I am still functioning after a year.
TIR: You are an advocate for both more ALS research and the immediate FDA approval of a drug known as NurOwn. This drug has been shown to slow the progress of ALS. Unfortunately, the FDA recently decided not to approve the drug NurOwn, which is devastating for ALS patients. As an ALS patient, why is the approval of this drug so very important to you right now at age 32?
SS: It is like I am in a horror movie. This disease is a death sentence and all they can tell me is drink a lot of water. There is a pill that can potentially extend my life for 3-6 months and enable me to keep functioning. When you are staring down the barrel, you want to say are you kidding me?
ALS is hard to diagnose and hard to treat. It is rare and it has so many different causes. Your body is built to protect your brain. When you take a drug it won’t go into your brain, most drugs don’t penetrate the blood-brain barrier. NurOwn has been in development for 11 years. With the use of NurOwn, ALS has been stopped in its tracks for 35% of people in trials. I wake up every day and get a lot worse. I do not think I can go out for a jog anymore without falling on my face. I have a life worth living right now. In two, three, five, eleven years now, I don’t know where I will be. Once I lose function I cannot get it back. With this treatment, I would be able to live a longer life. I know I will live a shorter life than I thought I would, if something can stop my ALS, I could live.
The FDA decided not to approve NurOwn. I could have tried this drug. Government agencies are telling me they won’t help me take something that will prevent death. People wrote letters and FDA leaders wrote back and said they wanted more data. Do you want to see more data or watch people die? Many ALS patients won’t be here when the drug is approved. They are going to wait until I look like an ALS patient before I might be able to get treatment.
Just this week, a scientist has found a way to reverse the deterioration of the neurons. I have all the faith in the world that we will get there, but right now we need hope. ALS patients feel like they are showing up to our lives every day completely defenseless. Cancer drugs are approved more often but because ALS is a rare disease.
More and more younger people are getting ALS. No one knows why. Is it the environment or the food we eat? I believe it is way more common than people think. We are in the United States of America. We just created a vaccine for a global virus, why can’t we fix this? There is no cure, that is it. Cystic Fibrosis is now 90% curable because there are treatments and medications. That is what ALS patients are looking for...we are looking for everyday people and the government to give us access to drugs.
People know me as the girl who is willing to speak and can string a sentence together. I have been dedicating myself to this cause and getting others to support this cause.
“Shelly is the most selfless person I have ever met and the best person to have in your corner. Her determination, courage, and drive are beyond inspiring. Watching Shelly battle this cruel disease day in and day out has truly changed my outlook on life itself. Little woes I no longer give the time of day. To watch someone day after day, no matter how emotionally draining, give their all to fight not only for herself but the entire ALS community your whole perception of things that “matter” changes. We take days for granted left and right, with ALS every day is a gift. Being able to sign your name on your niece’s 1st birthday card is A GIFT. Being able to open a water bottle is A GIFT. Shelly always says ALS is the worst thing to happen to her but she will be the best thing to happen to ALS and that has become her mantra. We need to make treatment available, we need to give these people options, we need to treat them like humans and not lab rats hoping for a glimpse of hope 20 years down the line. These people do not have twenty years, some don’t even have 20 months. People are dying and we are just sitting by and waiting,” explained Shelly’s dear friend, Ashley Silver.
TIR: How can members of the community help?
SS: There will be petitions to sign, there is money to donate, and we will need people to reach out to government officials. Last year my friends and family members were calling governors to get a bill approved in November and we didn’t have time to get enough people to approve it. The bill is called the ACT for ALS. Congressman Fortenberry Introduced this bill, but we could not get support (click here for more information). Frank Pallone, a Congressman from Central Jersey, does not support the bill. I spent November and December trying to get in touch with him. My family was calling and begging him to change his mind. Once we have the ACT bill number there will be more information. Right now, we are in a holding pattern while we wait for them to strategize.
NurOwn and this bill are NOT being pushed by the ALS Association. They are not helping with the new legislation and new treatments. It is all grassroots. We are all doing this on our own with no real money or backing. The ALS Association does not see this as a priority. The leadership is there to fundraise but they are not focused on helping people today. It feels maddening to know that the agencies, government officials are not helping us. This is something that can happen to them or their family members. They have other priorities. They don’t seem to care enough.
With COVID and social injustice issues, there is only so much attention and money to go around. These issues are important, but we, ALS patients, are sick of waiting. It needs to be our time because we don’t have a lot of time. There are treatments out there. There is science out there. I will pay for what I need. I am not asking for things to be free. We don’t have time. We are trying to make noise and be respectful but you get to the point of not knowing what to do.
We need people to raise awareness. To get in front of people and let them see it for what it really is. We need people to see that it is horrible and ask how they can help. I feel like I am on the other end of injustice. It feels like we are just a sad story. It will even help people who lost their loved ones, those people who have not bowed out. These people who have lost someone know how awful this is and they want to fix it for other people. It is a cruel disease. My brain will know what is going on and I won’t be able to help myself.
People can help by showing their support through a donation or by coming to an event. It is going to take an army of voices to protest and help. People I barely knew who have helped me. There is a strong sense of community in Rutherford. Hearing “we are there, we are with you” is so important.
Another one of Shelly’s close friends, Amanda Rienstra, told TIR, “For as long as I’ve known Shelly, she has always been effortlessly brave. She has a courageous vulnerability that makes her a voice for so many facing this awful disease. Shelly has taken her devastating diagnosis and turned it into luminescence and love. From the beginning, Shelly has been forging the fire and advocating not just for herself but for the large community of ALS patients around the world. The humility, strength, and empathy that Shelly embodies are what we all strive to have and the reason we keep fighting for a cure.”
TIR: Recently, you worked with your friend, Jeremy DeHitta, in his local studio to create a video. Jeremy owns a media company called, “Dream But Don’t Sleep”. Since your career is in communications, you felt comfortable writing the script. What is the video all about? Where can we watch it?
SS: I have a website called www.fightALSnow.org. On the website, there is a watch my story section. Jeremy and I went to high school together. A friend of a friend told him about me and he reached out. People are coming out of the woodwork to support me. It is really heartwarming.
I have always used social media with my job, but I never really used it personally, but now I do. I am able to do so much. It is a great platform for spreading messages.
“I have known Shelly since we were little girls playing sports together in Rutherford Recreation and then eventually for the High School. Anyone who knows her knows she is a fighter. She is such an inspiration to all of her family and friends. Shelly has said before, “ALS has been the worst thing to happen to me, but I’m going to be the best thing to happen to ALS.” That couldn’t be more true, she will beat this but we need everyone’s help to fight with her,” Michelle Ryan, Shelly’s close friend, told TIR.
TIR: This disease is completely unpredictable and can affect anyone, not just older men, as many people often believe. That being said, funding for ALS research is crucial for those who are currently diagnosed and those that will be diagnosed. How can people help support ALS research?
SS: They can go to our website. We (my friends from high school and one friend from college) have created our own Fundraising machine. We meet monthly. We raise funds for potential treatment. We create events. We are together more than ever. It really brought us together. They are the best team I can ask for and we have a lot of fun with it. The funny thing is we all played sports together in high school. We have come together as a team before all of this happened and we are together as a team again.
The flyer below is for an upcoming fundraising event for Fight ALS Now, please click this link for more detailed information and to register.
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