From Timesheets to Treatments — My First Steps at RDR

130 applications later, I finally landed a role as the Marketing Specialist at RDR — Rare Disease Research, an independent clinical research site network dedicated to conducting clinical research, accelerating the development of safe and effective treatments, and providing rare disease patients with access to innovative investigational therapies. This came at the perfect time because, coincidentally, today is Rare Disease Day!

It’s a bit scary learning CRM software like Mailchimp and Seamless.AI — tools I knew nothing about before. Getting the hang of marketing email campaigns and deciphering the fancy RDR office lingo has taken time. But what I love about my boss, Miro, is that during our first call, he said, "I know having a disability can be challenging, so if you need to slow things down or have specific questions, I'm happy to help. Also, if I say anything insensitive about disabilities, please let me know." This hit me because many employers aren’t as considerate about things like needing extended time on assignments or health check-ins. 

At NYU, I had accommodations for my cognitive impairments — extended time to complete assignments so I could succeed, even though I worked slower than my peers. The quality of my work was never in question. And it looks like RDR understands this, too. So, in the next 1–3 months, while I’m in "training mode," I’ve got to give it my all because Miro deserves it. He’s created an inclusive workspace where I can thrive.

The company is based in Atlanta, and since I'm a contract worker, I have time to learn the ropes remotely. Sometimes, I even strategize with my mom, who’s a brand strategist in pharmaceuticals. The next three months of learning are a bit scary, but hey, I got this. I’m also embarking on a three-month cannabis cleanse. It might not be what I originally planned, and my parents definitely requested it. But maybe it’s time to manage my cannabis use in a way that’s financially and mentally sustainable as an adult. It might not be heroin or alcohol, but it can creep up on you.

I just want to prove I can be financially stable and manage my use better, both mentally and physically. My mom has plenty of faith in me — my old-school dad, not so much. To him, I’m a “burn-out.” Understandable, considering I used to live under his roof while receiving SSI for my disability. But that’s slowly changing. I’m a working man now, and I’ll be out on my own soon, no longer stuck in the college dormitory. As Terence McKenna said about cannabis, “No other drug can compete with cannabis for its ability to satisfy the innate yearnings for archaic boundary dissolution and yet leave intact the structures of ordinary society.” That’s true when you’re in the driver’s seat, and not the substance, which is exactly where I’m heading.

I’ve also decided to continue my participation in the Hope-3 trial. Other than cannabis, there are many good treatments in development for Duchenne muscular dystrophy that could change the disease progression, rather than just focus on reducing inflammation and muscle spasm pain. The study was initially a two-year project, but it’s now nearing FDA approval. Along with my new job in this space, it just felt right to sign the paper and continue.

Now, I’m fully in charge and have found a healthy dynamic with my parents regarding clinical trials. I no longer feel like a lab rat. I have a much greater appreciation for Charley’s Fund now that I’ve been given permission — not forced into these studies. With my new relationship with my parents, my employment, a summer to look forward to, and a three-month cannabis break, I’m set to live an independent life despite my diagnosis.

I’m getting back into my old hobbies, ones I abandoned while unemployed — like reading, watching NBA basketball, and finding myself way more interested in seeking a life partner. I used to get sad and angry when things seemed to work out for my siblings and buddies while I was always full of life but denied romance. But I’m still giving it a shot — smiling when I see a beautiful woman, playing around on Hinge and Dateability, looking for a life partner, and practicing my dating skills.

My Jew fro is huge right now, but knowing my job was coming, I’m finally cutting it to look more work-ready and office-appropriate. So, even though it gets dark at 6 p.m., I’ll be up, blogging away, working out the logistics of the podcast, and hustling.