My name is Lacey, and I am the Community Manager for Shadow’s Edge – a free mental health mobile game for young people facing chronic illness or other medical challenges. One of the many wonderful things about my job is that I often get the chance to meet remarkable people in the mental health and chronic illness sectors and learn more about how they are changing the world for the better. I recently had the honor of connecting with the team behind FindMeCure, and I wanted to share this amazing company with our Shadow’s Edge community. Not only are they wonderful people to talk to, but they also provide a much-needed resource for those with chronic illnesses seeking treatment and relief.
Hi, my name is Nelly, and I am the Marketing Specialist and Patient Coordinator for FindMeCure – a free platform for patients looking for clinical trials near them. What I love most about what we do at FindMeCure is the feeling of hopefulness whenever we successfully connect a patient to a trial. It means that this person can now access a treatment in development that could benefit them more than anything currently available. Many patients who apply for clinical trials have already tried several treatments with limited success and desperately need something to finally work.
What is FindMeCure, and how does it help chronic illness patients?
FindMeCure is a free online platform where patients can search for clinical trials near them. But this is not where our support ends – when a patient applies for a trial through the platform, we reach out to the study team on their behalf. We aim to make the path for the patient as short and straightforward as possible: they search for trials, apply, and get connected to the relevant people.
Many patients nowadays find us through our blog as well. We make it a priority to spread awareness about chronic illness and provide other resources like patient blogs, YouTube channels to follow, organizations, information about support groups, and more.
For someone who has never been a part of a clinical trial before, can you explain how this could be a potential treatment option for someone with a chronic illness?
Absolutely. We do a lot of patient advocacy and make it a point to spread awareness and fact-based information about clinical research. A clinical trial is typically (but not always) an interventional study, meaning medical professionals intervene (by administering treatment) and closely monitor the results. There are observational studies as well, but most patients looking to participate in research do so because they’re hoping for a better treatment.
By the time a certain treatment reaches Phase 1, which is when it starts being tested in humans, researchers already know it’s safe because it has been tested in animal models. What they don’t know is whether it works better than other treatments, what the optimal dose is, or whether it can treat a disease better than the current gold standard treatment. The aim of every company developing a potential treatment is for it to either perform better than existing treatments or address special cases that the current standard cannot. This means that if you find a suitable trial, you could receive an innovative treatment for free that significantly improves your symptoms. In fact, there are now more cases where, if you show improvement during the trial, you can continue receiving the treatment afterward. While it’s not guaranteed, this is becoming more common as patient care increasingly extends beyond the study itself.
Who conducts these clinical trials, and how is the information from the patient’s trials used?
Usually, studies are sponsored by pharmaceutical companies that have developed a molecule with therapeutic potential. Sometimes, they are sponsored by academic institutions. Various professionals are involved in the study process – from study design and patient recruitment to treatment administration and monitoring.
The information collected during a study is used to determine how well the treatment works. While the information (such as blood samples or scans) is not made public, the study's results are shared.
How did FindMeCure come to be? What was the initial spark that began the company?
Maya Zlatanova’s sister became very sick, but there was no effective treatment available. Maya, already familiar with clinical trials, began searching for an alternative – something still in development. However, she quickly realized that even someone with her background in clinical research could get confused by the jargon and lost in the scattered information available.
This is how the idea for a patient-friendly platform, where people could search intuitively, was born. Maya partnered with Miro and Ivaylo, and they started building a team of like-minded individuals. The rest is history.
Given how the company started, does that mean many of you on the FindMeCure team have similar stories of caring for someone with a chronic illness? Or having one yourself?
The team has previous experience in clinical research and patient advocacy, and our shared values brought us together. All of us are driven by the desire to bring innovative treatments closer to the patients who need them.
What would someone need to get started with FindMeCure? Does it cost anything to join?
No, searching for trials on FindMeCure is completely free. The entire process is free. Also, when you join a study, the cost of treatment is covered by the study sponsor, including necessary monitoring procedures. In some cases, additional costs, like travel or accommodation, may also be covered – this is becoming more common.
We’re strong advocates for more patient-centricity in clinical research because the reality is that even people who want to join and are eligible sometimes cannot afford time off work or travel to another city. With COVID-19, remote or virtual trials are becoming a priority, which could ease the burden on patients.
Do you have a favorite success story from someone who has benefitted from FindMeCure?
Oh, there are so many stories! People reach out to us with incredibly touching experiences. One of my favorites is about a young man who, at the beginning of the pandemic, wanted to volunteer for COVID-19 research. His girlfriend was suffering from an autoimmune disease, and they couldn’t see each other because it wasn’t safe. He wanted to help research progress so they could finally be reunited. We connected him to a trial accepting healthy volunteers.
Another story close to my colleague Ann-Marie’s heart involves a young couple. The husband had a rare cancer, and no study was available in their country. We successfully connected them to a trial in Romania, and the results were very promising. These stories truly make the journey worthwhile.
You can find out more about FindMeCure and check out their incredible resource at FindMeCure.com. You can also read the blog they’ve written about us and our game by clicking this link!