Living with Multiple System Atrophy (MSA) can be a relentless battle, filled with daily challenges and a search for effective treatments. However, for me, a ray of hope emerged through participation in the MyTrial program. Here’s a glimpse into my experience, particularly focusing on the crucial hours spent on Day 3 undergoing skin biopsies.
2:00 PM – Arrival at Khurana Labs
Continuing at 60 Fenwood Rd, Boston, there was a mix of anticipation and relief. The 3 day event was coming to a close. The MyTrial program has now shown me its cutting-edge research and innovative approaches to understanding and treating neurodegenerative diseases. The second step of the day involved skin biopsies, a pivotal part of the research process.
2:15 PM – The Skin Biopsies Begin
The procedure started with the medical team explaining the steps involved. Understanding that this small step could significantly contribute to scientific advancements and potential treatments was a comforting thought.
From skin biopsies, they culture and bank skin cells from the patients and can generate induced pluripotent stem cells. First, they capture the toxic protein (alpha-synuclein in this case) that is aggregating in the disease, and they use a novel experiment that enables them to amplify the same type of synuclein that accumulates in each of the patients. Secondly, the lab has also developed protocols that allow them to generate neurons and other CNS cell types from these stem cells. This allows them to create a personalized model from the patient – capturing the right cell type and the right form of the aggregating protein “in the dish” in the lab. They envision using these models to evaluate drug intervention by looking in parallel at what’s happening to the neurons in the dish with other biomarkers and clinical data. The procedure includes taking one very small sample from the back of your neck, one from the side of your thigh, and two from your ankle.
3:30 PM – We’re done! A Vision for the Future
By the end of the procedure, there was a profound sense of contribution to a larger cause. The personalized models developed from these biopsies allow researchers to evaluate potential drug interventions meticulously. By observing how neurons in the dish respond to treatments, alongside other biomarkers and clinical data, the research aims to pave the way for more effective therapies.
Reflecting on the Experience
Participating in the MyTrial program is not just about being a subject in a study; it’s about being an active part of groundbreaking research that holds the promise of changing lives. For those battling MSA, this journey is one of hope, resilience, and a collective effort to find a cure.
The skin biopsies, though a small step, are a significant contribution to the scientific community’s understanding of MSA. Each patient’s participation brings us closer to uncovering new treatments and, ultimately, a cure for this debilitating disease.
In conclusion, the MyTrial program at Khurana Labs offers more than just an opportunity for scientific exploration; it offers hope and a sense of purpose for those suffering from MSA. As research progresses, the contributions of each participant become the stepping stones toward a brighter, healthier future.
Next Up: We await the results of the last 3 days tests and the plan moving forward based on those results.
~Coach~
Living Beyond the Diagnosis 
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