Support Brandon for a better quality of life

Hello, we are David and Lillian Cochrane and we are requesting your support to enable our son, Brandon, to travel, for at least the next 2 years without financial hardship, from Nova Scotia to the Research Institute of the McGill University Health Centre in Montreal.

Brandon was officially diagnosed in 2020 with a rare genetic (mitochondrial) disease called POLG (https://polgfoundation.org/what-is-polg) which is incurable, life-threatening and life-altering. His first noted symptom, peripheral neuropathy, started as early as 2015. In 2017, CPEO (chronic progressive external ophthalmoplegia) was diagnosed https://www.umdf.org/cpeo). There currently is no cure, but, a drug, which has the potential to improve one’s quality of life, is being trialed at McGill.

In order to understand the devastating impact of this disease, we will attempt to give you an overview of Brandon and his previous life. Brandon was an enthusiastic long distance runner, ocean sailor, avid hiker, cyclist, wilderness paddler, keen reader and writer, master mariner. He is now 47 years old and is unable to do any of these activities.

In 2021, he failed his marine medical and, therefore, could no longer go to sea. In the spring of 2023, he was forced to stop working altogether. The disease symptoms have been steadily escalating – profound exhaustion, walking difficulties (requires assistance), balance and coordination problems, increased polyneuropathy, stroke-like episodes, seizure-like episodes, speaking impairments, tremors, spasms, increased muscle weakness, irregular movements (Parkinsonism), general functioning difficulties.

Earlier this year, Brandon’s geneticist in Halifax presented the option of investigating this drug research trial. Recently, he was invited to join the trial group. https://www.vjneurology.com/video/q5ffwwfxscs-improving-quality-of-life-in-mitochondrial-disease-patients.

As stated by Dr Kenneth Myers, Researcher, “We don’t currently have any adults enrolled in the trial. Our hope is that this would at least slow or arrest the progression of POLG-related disorders”.

https://www.vjneurology.com/video/hckd0n0z-om-safety-and-efficacy-of-deoxycytidine-and-deoxythymidine-in-treatment-of-polg-related-disorders

Our goal is to raise approximately $10,000 to help cover the cost of travel and other related expenses for Brandon and a caregiver to go to Montreal as required. His first appointment is scheduled for January 25th and 26th 2024.

We sincerely thank you for reading and possibly giving consideration to donating to our cause. Brandon wants everyone to know that he is extremely grateful and appreciative for any support that may be given. We will provide regular updates.

As parents, this is one of the most difficult things that we have ever had to do. Lastly, we all know that being a part of this drug trial should not only benefit Brandon but others in the future as well.