Everest in the Alps for Brain Tumour Research

Alex's Journey

In October 2021, our son, Alex, received a life-shattering diagnosis after a year of enduring relentless migraines, vomiting, papilledema, seizures, and ultimately the loss of sight in his right eye. A brain biopsy in July 2021 led to a diagnosis of hydrocephalus and the installation of a VP shunt in his brain. Yet, the relentless mystery persisted, casting a dark shadow of uncertainty over our lives. It wasn't until a fateful spinal biopsy in September 2021 that the unimaginable truth emerged – DLGNT, an uncommon and devasting form of brain cancer.  Alex is a singer and songwriter known as Syren, and if you watch the video, he will tell you his story in his own words.

Alex's diagnosis was so rare that even his oncologist had never encountered it before. We embarked on a global quest for answers, reaching out to professors, doctors, and researchers worldwide. However, before treatment could begin, we faced a significant hurdle - a lack of sufficient tissue from the spinal biopsy for necessary analysis, and additional spinal biopsies were deemed too dangerous.

In November 2021, as cancer spread rapidly, Alex underwent a crucial third brain biopsy with expert consensus from institutions like Toronto SickKids, Heidelberg, and Great Ormond Street Hospital, all supporting the use of Trametinib, a targeted chemotherapy drug with anti-cancer properties. Starting Trametinib in December 2021, Alex experienced notable progress, witnessing tumour regression in the brain and spine, although manageable skin issues emerged. By the summer of 2022, seizures emerged, requiring nearly a year of medication trials for control.

In early spring of 2023, recognizing tumour progression in MRI scans, we sought an alternative —Tovorafenib, a trial drug available only in the USA or Barcelona. Despite our efforts, regulatory hurdles in Barcelona worsened Alex's condition. Returning to the UK, we resumed Trametinib and steroids to ease some symptoms, but as tumours neared his brain stem, Alex faced the loss of short-term memory. A glimmer of hope emerged through a Toronto clinical trial, yet Alex's health precluded travel. After an unwavering eight-week campaign, we secured compassionate use of Tovorafenib in the UK, resulting in significant tumour reduction within six weeks and the restoration of Alex's short-term memory.

At the time of Alex's diagnosis, we felt lost and alone, spurring us to advocate for brain cancer research. We built an international community of over 40 DLGNT patients and their families through our website and Facebook page, believing that together, we can offer comfort and hope to others facing similar battles.  But we quickly recognized we needed more help.

You may wonder, "Why is this challenge so crucial?"

The answer lies in its profound impact on our children like Alex and their families. Imagine if it were your child or loved one facing this daunting diagnosis. Our mission is clear - to raise funds for groundbreaking research into brain tumours, particularly DLGNT, where research is scarce. 

We have partnered with Kindred Foundation to raise funds to create a new research grant for DLGNT in Canada.  This grant will fund research to develop new treatments, tailor treatments to improve the quality of survival, and help reduce the harm that brain tumours have on children and their families.  

Through Kindred Foundation, 100% of your donation will go towards the development of this new grant for DLGNT research - no administrative fees are taken.

Team Syren: Martin Bell, Adam Cruickshank, Kosta Jovanovic, Pablo Tejera Cuesta, and Mike Matson

We are very grateful to the Energy Council for establishing Martin and Katie's Everest in the Alps fundraising as their charity partner for 2024.

To donate by wire transfer or for donations of securities, please contact Antonia Palmer: antonia@kindredfoundation.ca. Donations of securities do not incur capital gains tax. To donate by eTransfer, please send your eTransfer to stacey@kindredfoundation.ca and also send an email to the same address with your name and mailing address to receive your tax receipt. 

Please note: We are using Zeffy as our fundraising platform and what is awesome is that Zeffy is 100% free to use for charities.  There are no fees charged to Kindred Foundation to use Zeffy.  Zeffy asks for a donation; however, this can be changed to your liking during the donation process.