Multiple System Atrophy
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Part 2 of 4: “Navigating New Horizons: My Perspective on the ONO-2808 Clinical Trial for MSA”
This study, aiming to evaluate the safety, tolerability, and efficacy of ONO-2808 in MSA patients, is a significant step in our quest for better treatment options. Continue reading
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“Hope on the Horizon: My Take on the TAK-341 Clinical Trial for MSA”
Living with Multiple System Atrophy (MSA) is like navigating through a thick fog — you’re never quite sure what lies ahead. When I heard about the clinical trial for a drug called TAK-341, it was like a ray of light piercing through that fog Continue reading
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“Living with Hope: My Journey with Multiple System Atrophy and the Right to Try Law”
However, the reality has been disheartening. Despite the law’s intent, the actual process of getting drug companies to comply with it is incredibly challenging. Continue reading
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The Lifeline of Love: How My Support Group Sustains Me Through MSA
There’s one invaluable treasure that has been my constant source of strength and hope – my support group, comprised of my loving family and incredible friends. Continue reading
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Eat, Drink, and Be Merry: Finding Joy in Holidays with MSA & Finding Strength in Togetherness
Holidays, for me, are more than just festivities; they’re a reminder of the beauty of life, the importance of family and friends, and the need to cherish every moment Continue reading
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“The Battle Against MSA: Understanding and Combating Neurodegenerative Disorders”
My most recent findings have led me to focus on Synucleinopathies as the “mechanism” to base my fight for life on. Here’s why: Continue reading
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Dealing with Disappointment and Emotional Pain When Things (Seemingly) Fall Apart
So we commit to moving forward, not because it is easy, but because it is necessary. Our dreams may have been shattered, but not our spirit. Our fears, though realized, will not claim victory over our resolve. I am left with no choice but to persevere, to continue the search for a clinical trial designed… Continue reading
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Hope on the Horizon: A Journey to Mayo Clinic for the MSA Stem Cell Trial on Nov 1st 2023
The Mayo Clinic has long been a pioneer in medical research and patient care. Their commitment to advancing medical science is now extending to those afflicted with MSA through a clinical trial that holds immense promise. The trial, known as “Clinical Trial for Multiple System Atrophy Using Autologous Mesenchymal Stem Cells,” aims to explore the… Continue reading
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Fighting Fatigue: Building Energy Levels with MSA
In this post we will tackle the significant fatigue and lethargy of MSA. Discusses lifestyle adjustments, treatment options, and mindset shifts to reclaim as much energy as possible. Continue reading
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Living with Multiple System Atrophy (MSA): A 1 in 25,000 Lottery For Life
Imagine your body as an intricately designed machine, with numerous systems working harmoniously to keep you alive and well. One of the key systems that plays a vital role in maintaining your bodily functions is the autonomic nervous system (ANS). This system silently and diligently controls things you might not even think about consciously—your heart… Continue reading
Living Beyond the Diagnosis 