Finding Hope in Research: How a Clinical Trial Changed Raziel Green’s ALS Journey

Raziel Green, patient with SOD1-ALS

For years, Raziel Green was a dedicated runner and devoted mother, balancing an active lifestyle with the joys of family. But when she began experiencing unexpected symptoms — heavy legs, balance issues and muscle loss — her life took an unexpected turn. After two years of searching for answers, she was diagnosed with a rare, genetic form of amyotrophic lateral sclerosis (ALS) linked to a mutation in the superoxide dismutase 1 (SOD1) gene. Determined to fight back, Raziel enrolled in a clinical trial for tofersen (Qalsody), a decision that has changed her trajectory. Now, eight years later, she shares her journey of resilience, hope and the power of research in extending quality of life.

Can you take us back to the first symptoms you noticed? What were those early warning signs like for you?

Raziel Green: My story starts in 2014 when, during one of my regular runs, my legs just felt heavy. At the time I was a consistent runner, regularly running 3 to 4 miles, and so I realized something was not right. I went to the doctor, and the initial recommendation was simply to go back to the gym to try to build up my strength. Because these were doctor’s orders, I followed them, but the symptoms persisted. I even tried cycling, thinking maybe that would help since I would be sitting down. But I knew it was something more when I couldn’t even walk up the three stairs in my own home. 

What was the diagnostic process like? How did you handle the uncertainty of those two years before getting answers?

RG: It was hard. I spent two and a half years with a neurologist, doing test after test. Everything came back with “a clean bill of health.” It was two years of me not knowing my diagnosis. I was getting worse but had no answers. My kids were so young that I couldn’t even talk about what was going on. It was a long road, and I was just lost.

Eventually, I went to see another doctor in December 2016 where I was offered genetic testing. Following that test, in early 2017, I received a confirmed diagnosis of SOD1-ALS, an extremely rare, genetic form of ALS.

As I started to accept my uncertain future of life with ALS, I received a call from my doctor about a clinical trial at Massachusetts General Hospital testing an experimental treatment for SOD1-ALS called tofersen (now U.S. Food and Drug Administration (FDA) approved as Qalsody). I was accepted into the clinical trial in May 2017.

Looking back on my experience to diagnosis, for anyone in the same position, you’re allowed to feel the uncertainty — the sadness, the anger, the frustration. But if those feelings are hindering you, you need to communicate that to your doctor. You have to keep pushing to get the uncertainty out of your head. If you don’t advocate for yourself, who will? If your doctors are telling you they can’t do anything, you need to find another doctor. Even if you just have a sliver of hope, you can better advocate for yourself and find someone with the answers.

What motivated you to join the clinical trial for tofersen?

RG: The major reason I decided to move forward with the clinical trial was my family. My form of ALS is genetic — my mom and aunt passed away from it — so I knew that I had the potential to change the future for my children and for others as well. There was so much more to gain than to lose.

With Qalsody, my disease has been stable now for seven years and the progression hasn’t worsened. This is my experience — there’s nothing hypothetical about it. I’m living it now!

How has your treatment impacted your daily life and ability to stay active and present with your family?

RG: My diagnosis changed everything, of course. It’s a terminal illness, but thankfully, there’s treatment available. I was diagnosed 10 years ago and my treatment has allowed me to be present for my family in ways I might not have been otherwise. My daughter, Malaya, is now teaching and living in Manhattan. My son, Hayden, is in college at Boston University, and I’m still able to go to his roller hockey games and be there to support him. It’s given my children hope and they’re at ease, knowing I’m still a part of their lives.

How did the supportive community within the trial help you emotionally and practically?

RG: The support I received from everyone involved at Biogen and Massachusetts General Hospital made it all possible. The teams made it fun and relaxed, and I felt very cared for throughout the entire experience.

I also had support from family and friends, who would travel with me to Boston every month. We would make a weekend out of it. A bonus to the trial being in Boston was that my son is a student at Boston University, so I was able to see him anytime I was there.

What would you say to someone who is unsure about participating in a clinical trial?

RG: Don’t be afraid to ask questions — before, during and after — so you feel comfortable with the trial parameters and all that will go into it. I always kept in mind that my participation could be life-altering — not just for me, but also for my children and others living with SOD1-ALS. It helps to remember the lasting impact your participation could mean for you and for others.

What do you wish more people understood about ALS and the impact of research?

RG: You can create change. I can say that my participation in the Qalsody clinical trial helped contribute to a significant advance for the community.

I want people to know that this trial gave me hope and the motivation to continue. With a progressive disease like ALS, it’s easy to give up and stop pushing. If I can be a voice for others, I want to give them hope. I was in the trial for 7 years and all the hard work was worth it. My children share the same gene, so I wanted to make sure I was doing everything that I could to find a treatment or a cure.

Ultimately, I want to emphasize the importance of advocating for yourself because ALS is a rare disease. Keep going. There’s always someone out there who can support and help you. I want people to hear us. Even if you don’t know the answer, find the resources that are out there and just keep going.