In September 2024, Siqi Chen, a technology entrepreneur based in San Francisco, faced a parent’s worst nightmare: his five-year-old daughter, Mira, was diagnosed with Adamantinomatous Craniopharyngioma, a rare and benign brain tumour situated near critical brain structures. This diagnosis propelled Chen into a fervent quest for effective treatments, leading to a multifaceted fundraising campaign that has attracted significant attention, particularly from the cryptocurrency community.
on 9/23, mira was diagnosed with a rare brain tumor called a craniopharyngioma.
while benign, it is located in an extremely dangerous area of the brain and associated with the worst quality of life outcomes out of all survivable brain tumors. pic.twitter.com/GANqrb5ERD
Adamantinomatous craniopharyngioma is a non-cancerous tumour that, due to its proximity to the pituitary gland and hypothalamus, can cause severe complications, including hormonal imbalances, vision problems, and cognitive difficulties. The rarity of this condition has resulted in limited research and treatment options.
In response to Mira’s diagnosis, Chen launched a GoFundMe campaign titled “Help Mira and Dr. Hankinson Find a Cure,” aiming to raise funds for Dr. Todd Hankinson’s laboratory at the University of Colorado. Dr. Hankinson’s lab is notable for being the only one in North America researching paediatric craniopharyngiomas. The campaign quickly gained traction, raising over $250,000 from more than 1,200 donors.
i am in tears. unbelievably grateful to the community that made this possible. thank you, thank you, thank you.
in addition to this $1M, we have also raised $250K in gofundme. yi and i are also donating another $100K from our personal funds on top to support the hankinson lab.… https://t.co/pX481ZrHgh
On Christmas Day, an unexpected development occurred when an anonymous individual created a Solana-based memecoin named $MIRA to support the fundraising efforts. Half of the total supply was transferred to Chen, who began selling portions of the token, pledging to donate 100% of the proceeds to Dr. Hankinson’s research. The memecoin’s market value experienced a significant surge, with reports indicating that it reached a market capitalisation of approximately $77 million at its peak.
The cryptocurrency community’s response was overwhelmingly supportive, with many praising the innovative approach to fundraising for a critical cause. However, the situation also raised ethical questions regarding the volatility of cryptocurrencies and the potential risks associated with relying on such an unpredictable market for funding essential medical research. Some experts cautioned against the sustainability of using memecoins for charitable purposes, highlighting the need for more stable and regulated funding sources.
the outpouring of support across the internet has meant the world to us, and has made our life so much warmer for our family, right when we needed it most.
The substantial funds raised through these combined efforts are poised to meaningfully impact research into adamantinomatous craniopharyngioma. Dr. Hankinson’s laboratory is expected to use these resources to advance clinical trials, explore potential treatments, and improve outcomes for children affected by this rare tumour. The unprecedented support from traditional fundraising and innovative cryptocurrency initiatives highlights the potential for diverse funding mechanisms to drive progress in medical research.
Conclusion
Siqi Chen’s multifaceted approach to fundraising, encompassing traditional methods and innovative cryptocurrency initiatives, has not only provided critical support for research into a rare and challenging medical condition but has also demonstrated the potential for diverse communities to come together in pursuit of a common goal. The substantial funds raised offer hope for advancements in treatment and improved quality of life for children like Mira facing adamantinomatous craniopharyngioma.
