About Sho Aoki's Support Group
We, the members of Sho Aoki's Support Group, are dedicated to supporting Sho Aoki, a patient diagnosed with SOD1-type Amyotrophic Lateral Sclerosis (ALS), in his quest for the early approval of the new medication Tofersen in Japan. Our efforts extend to expanding ALS research, establishing effective treatment methods for many patients, and organizing a fundraising campaign to enable Sho to access Tofersen before its approval.
Sho first noticed ALS symptoms in the fall of 2021 and was diagnosed in June 2022. Two months later, genetic testing confirmed he carried a hereditary SOD1 mutation. Until April 2023, there was no cure for ALS, and patients and their families could only watch the disease progress. However, the U.S. approval of Tofersen, a pioneering treatment for SOD1-ALS, offers new hope. We are committed to supporting the establishment of effective treatments for many ALS patients and advocating for Tofersen's swift approval in Japan.
About Sho Aoki
Sho Aoki, born in 1988, is a vibrant 35-year-old with a passion for sports. From his days in elementary through to high school, soccer was more than just a game to him; it was a way of life. His love for staying active didn't wane as he grew older, embracing soccer, golf, and various physical activities with open arms.
After earning his degree from Nihon University in Tokyo, Sho embarked on a culinary career, securing a managerial position at a local restaurant. Dreaming big, he aspired to one day own a restaurant, dedicating his days and nights to managing four establishments, driven by ambition and a love for the culinary arts.
However, in October 2021, Sho encountered a bewildering challenge. Rushing to catch a train to work, he noticed an unsettling change: his legs wouldn't cooperate as he intended. Initially brushed off as a consequence of inadequate exercise, the symptoms escalated, morphing into a harrowing reality. Weakness in his toes, unexplained coldness in his feet, overall discomfort, and unusual fatigue became his daily adversaries.
Concerned, Sho sought medical advice, starting with an orthopedic surgeon. An MRI scan yielded no answers, deepening the mystery. With symptoms persisting, he was referred to a neurologist, haunted by the fear of facing the same fate as his father, who succumbed to ALS fourteen years earlier.
Undergoing further testing, including a needle electromyogram at Tokyo Medical and Dental University Hospital, Sho faced the truth after a rigorous two-week examination: he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), specifically the hereditary SOD1 type, confirmed through genetic testing.
As of July 2023, Sho's life has drastically changed. No longer able to work at the restaurant, he relies on a two-handed cane for mobility, with a wheelchair soon becoming an inevitable necessity. The loss of muscle mass, repeated falls, and an inability to stand unaided have become part of his reality, alongside weakening fingertips and difficulty breathing. With no cure for ALS available in Japan, Sho's fight continues, supported by delayed medication access.
About ALS
ALS is a neurodegenerative disease causing muscle weakness and atrophy, affecting limbs, and muscles necessary for breathing. It is not a disease of the muscles themselves but of the nerves controlling movement. Life expectancy post-diagnosis is typically 2 to 5 years, with hereditary forms like Sho's accounting for less than 10% of cases.
Challenging On The New Drug: Tofersen
In a landscape marred by despair for ALS patients, the approval of Tofersen in the United States in April 2023 emerged as a beacon of hope. This innovative drug targets the SOD1 mutation, a root cause of ALS found in approximately 2% of all ALS patients, offering the first treatment of its kind.
Sho Aoki was fortunate to access Tofersen through Tokyo Medical and Dental University Hospital, albeit facing the daunting financial burden of approximately 30 million yen per year until the drug is approved in Japan. Living in a single-mother household and unable to work, Sho's situation is dire. He and others in early stages of ALS urgently need this treatment to halt the disease's progression.
We appeal to your compassion and support for Sho and others like him awaiting access to Tofersen in Japan. Your contribution can make a significant difference in their fight against ALS. Thank you for considering our plea for assistance.
How The Donations Will Be Used
Your generous donations will help cover the costs of importing Tofersen for Sho's treatment. We are coordinating with Tokyo Medical and Dental University Hospital to determine the exact costs and will share updates as we have them.
Thoughts of Overcoming ALS
Despite the lack of a cure, the approval of Tofersen offers hope. Sho is determined to halt the disease's progression and advocate for the drug's approval in Japan, aiming to make effective treatment available to all ALS patients as soon as possible.
HP・SNS
We pledge to keep you updated on our fundraising efforts and Sho's treatment progress through our website, YouTube, and social media. Your support can make a significant difference in the lives of those battling ALS.
・Our Homepage https://www.sho510.com/
・Sho Aoki’s YouTube Channel https://youtube.com/@ALS-le3ny...
・X (Previous: Twitter) https://twitter.com/sho510group
・Instagram https://www.instagram.com/sho510group
Other Announcements
Please download the receipt from the URL in the payment completion email.
Translated by Eiyu Nakayama
