A man with Motor Neurone Disease from Redhill was shocked to learn he no longer qualifies for a Covid vaccine under current UK guidelines, which prioritize certain vulnerable groups. The UKHSA advises clinical judgment in such cases, but some patients and MPs are concerned about the communication and criteria for vaccination eligibility, especially for those with compromised breathing and other health issues.
A Ballynahinch man with MND advocates for wider access to the groundbreaking drug Tofersen, which may slow disease progression, emphasizing the importance of timely treatment to improve quality of life and extend independence. The drug is currently not widely available in the UK, with efforts ongoing to increase access and funding.
Daily treatment with the veterinary drug monepantel was found to reduce the rate of disease progression by up to 58% in people with ALS or MND, with generally safe and well-tolerated oral therapy. The completed MEND trial in Australia showed promising preliminary efficacy, leading to plans for a Phase 2/3 study to start later this year. Monepantel, known for deworming in veterinary medicine, may activate a pathway to clear toxic proteins contributing to disease progression, potentially extending survival by 13.5 to 56.5 months.
Dr. Louise Jordan, a dedicated general practitioner and advocate for end-of-life care, passed away at 62 after a battle with motor neuron disease (MND). She founded a charity to help terminally ill patients die at home and continued to raise MND awareness and funds even after her diagnosis. Her legacy endures through ongoing support for the Rob Burrow Centre for MND and the inspiration she provided for future advocacy efforts.
A recent analysis of data from the PRECISION-ALS project has identified genetic and clinical factors that can influence the progression of amyotrophic lateral sclerosis (ALS). Factors such as C9ORF72 genetic mutations, bulbar-onset disease, and faster functional declines were associated with shorter survival times. Variations were observed among different centers in the timing of interventions like feeding tube placement and noninvasive ventilation, highlighting the need for further investigation. The PRECISION-ALS project aims to better understand the natural history of ALS and improve outcomes for patients.
Popular Twitch streamer Puppers, known for playing Dead by Daylight, has died at the age of 32 after being diagnosed with motor neurone disease (MND) in 2020. The game's community rallied around him and raised $270k to support his care through the Light in the Fog Foundation. Puppers was known for his positivity and catchphrase "stay comfy, because if you're comfy, you're winning". His friends and caregivers have described him as "a beacon of positivity" and "a kind soul we didn't deserve".
