Living Beyond the Diagnosis

Welcome back to my journey through the MyTrial research program at Mass General Hospital, in cooperation with The Harvard Biomarkers Study on MSA. This is the fourth installment of my blog series, chronicling my experiences and sharing insights and hope for fellow MSA sufferers. As I reflect on the past three months since my initial visit to Boston in May, I am filled with a mix of anticipation, gratitude, and a resolve to keep pushing forward.

Skin Biopsy Update: Tiny Cells, Big Potential

One of the most fascinating aspects of my journey has been the skin biopsy I underwent. I recently received an update from the researchers: they have successfully grown fibroblasts from my skin cells. It’s amazing to think about how these tiny cells, which took a couple of months to grow, are now being stored in Petri dishes for various purposes, including the potential creation of stem cells and tests on existing and potential treatments for MSA.

The process of making stem cells is intricate and time-consuming. Before diving into this significant effort, the team needs to ensure the fibroblasts are free of genetic mutations or other abnormalities. This quality control step is crucial, and it’s reassuring to know that the scientists are meticulous in their approach. Additionally, they have amplified synuclein from my skin and are currently analyzing the results. Each step, though slow, brings us closer to understanding and potentially finding a treatment for MSA.

Foralumab and Future Prospects

In terms of new treatments, the team is diligently working on the Foralumab study protocols and submitting them for FDA and IRB approval. While the process is lengthy and might not be ready by November, the effort and speed at which they are moving is commendable. Foralumab is designed to modulate neuroinflammation, a promising approach for MSA treatment.

For now, the focus remains on getting the necessary approvals. In the meantime, the team plans to conduct at least two lumbar punctures—one before starting Foralumab and one after—to measure neuroinflammatory markers in the cerebrospinal fluid. This data will be invaluable in tracking disease progression and the drug’s impact, once approved.

Exploring GLP-1 Analogues

There has also been discussion about GLP-1 analogues like Exenatide. While these have shown potential benefits in Parkinson’s Disease (PD) patients, their exploration in MSA is still in its early stages. The researchers are initially focusing on Exenatide for PD, given the existing evidence. For MSA, the primary candidate remains Foralumab. It’s a reminder of the complexity and specificity required in clinical research, but also a beacon of hope that new therapies are continually being explored.

Data Analysis and Patience

In May, I underwent PET scans measuring neuroinflammation (PBR06) and alpha-synuclein (SY08). The raw data from these scans are in, but the analysis is ongoing. The team is determining the best way to interpret this data and is completing recruitment for additional MSA and PD patients. This comprehensive approach ensures that any emerging trends are based on robust, comparative data.

It’s a bit of a waiting game, but the thoroughness and dedication of the research team offer immense comfort. They’ve assured me that we’ll discuss the data in more detail during my next visit in November, where hopefully, we’ll have more insights to share.

Holding On to Hope

As I navigate this waiting period, I am reminded of the importance of patience and optimism. Every step, every test, and every analysis is a piece of the larger puzzle. While the waiting can be challenging, it’s important to remember that progress is being made, even if it’s not always visible.

To my fellow MSA sufferers reading this, I want to say: hold on to hope. The journey is long, and there are many hurdles, but with each passing day, we move closer to better understanding and potentially conquering this disease. Stay strong, stay hopeful, and know that we are in this together.

Until next time, stay positive and keep pushing forward.

Warm regards,

~Coach~

#FuckMSA