One of the members of the Jordan's Guardian Angels global family is being recognized for her work and dedication in the rare disease community. Lexi Levine was nominated as a Rising Star for this year's RARE Champion of Hope Awards.
The celebration honors and recognizes true champions for rare disease, highlighting leaders who have made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders.
Lexi's brother Barry had Jordan's Syndrome.
In her own words, Lexi describes the passion behind her work.
My whole life I have been described as “too hopeful.” When my brother Barry, who had Jordan’s Syndrome, would be sick my family and the doctors would be whispering behind me, about how they worried my hope clouded my ability to understand the severity of the situation.
But for me, I had spent my whole life watching my baby brother who was continually told no- practically every day- break the odds, and do exactly what doctors told us he never would; so I knew he was stronger than they thought and that their doubt, only made him stronger.
Now as a clinical research coordinator, I couldn’t help but smile when my team spoke about this one mother. She was determined to give her baby a normal life, even though he had a very severe form of a devastating disease. I remember how others believed she didn’t understand how sick her baby was, and that her hopes were unrealistic. She even expressed observing this herself. And when I told her how strong she was for all that she had been through- she said: “I’m not strong. What else was I going to do?” And that is exactly what my mom would always say about my brother.
My patient’s mom, and me- we both fully understood just how sick our loved ones were. But we choose to look past the illness, enjoy our time together, and fight like hell; and that cultivates and undying sense of hope in a person- I think I am lucky enough to have that trait.
I am fortunate enough to work on some of the most cutting-edge clinical trials, in the field of spinal muscular atrophy (SMA). SMA is described as “the baby version of ALS,” meaning, that the muscles die over time. As a twenty-two-year-old, I ran an FDA audit on a trial I was the primary coordinator of; the drug was approved 3 months later. In its first five months, this drug saved 100 newborns, from this devastating disease.
I feel so proud to work for such a deserving population. I have never seen a more dedicated patient community; they truly are responsible for pushing this field forward, so quickly. Because this disease affects the muscles, most trials involve physical therapy assessments. And I get to record those sessions- and this is the absolute best part of my job. Because here, I see the science progressing.
Depending on the study, I get a month or two check in, for about a year or two, and watch as the medicine is making my patients stronger. I always say, I am willing to do whatever a patient may need. A lot of times, that means using my personal time. But then I go into a physical therapy session, where I as the videographer, and not as an “evil PT” (in that patients’ eyes, as they cry at the demands), become the patients’ favorite person in the room and it makes it all worth it.
My biggest challenge in the rare disease would be resources and acceptance. First, resources- as I am sure you are aware, the resources in any rare disease group, are scare. However, I think a lot of time that is what leads to staff burn out. So many people start off so eager to make a difference, but then do not have the support at work to accomplish what they set out to do, and that can be exhausting. So, because I cannot magically create resources that don’t exist, it turns into a challenge of not over working myself to compensate.
The second challenge is acceptance from the general population. I was never once ashamed of my brother, his limited abilities, or the way he looked. I did however get enraged when people would just stare at him. Even worse if they would say an inappropriate comment or use the “R-word.” But in addition to this outright rudeness, there needs to be a wider spread desire to make a difference. I often feel that those who are not affected by something like a rare disease, only support it as much as they have to. Meaning, they may make a donation once, or share a couple posts, but they’re not willing to necessarily sacrifice for the cause.
But I think today, more than ever, the challenge of people not wanting to make a difference in an area that doesn’t affect them personally, is something that needs to change to further the field.
My undergrad honor’s thesis was investigating the correlation between head circumference and epilepsy severity in infants with tuberous sclerosis complex.
We found some exciting results we are getting ready to publish! Now I am a clinical research coordinator in the neuromuscular program at Boston Children’s Hospital, primarily working in spinal muscular atrophy. And by coincidence, we are working on an SMA biobank with Dr. Wendy Chung, who is leading the PPP research. I’m studying for the MCAT, and am hoping to go to medical school in the upcoming years.
