Hi, for those of you who don't know- I'm Leah.
Together with my partner Joseph, we are planning to climb Snowdon at sunrise on the 5th of June 2024 to raise funds for the RUNX1 Research program. We will also be joined on the climb by a handful of our friends!
We are also doing this fundraiser to raise awareness for the RUNX-1 FPD gene mutation, so please share!
*As this is an American charity, donations are taken at the dollar-equivalent to the pound donation.
Now, the backstory...
Back in 2019, I became unwell with treatment-resistant ITP (Immune thrombocytopenic purpura) - a rare, but usually manageable autoimmune / bleeding condition.
To better understand why my body resisted treatment, my doctors ordered genetic testing. In this, they found I have an even more rare genetic mutation called RUNX1-FPD.
Without being too scientific, this gene mutation has been linked to a 40% chance of developing Acute Myeloid Leukaemia (Cancer) and Myelodysplastic syndrome- as well as being linked to a whole host of autoimmune / bleeding / dietary disorders! Not very fun!
There is a small number of families who are known to have this mutation globally, with a smaller handful being within the UK. The research for the gene is currently conducted in the USA, under the non-profit charity.
We are hoping to raise funds and awareness in order to support their continued research into the RUNX1 gene mutation and cure, so please- if you can, donate!
Thank you!
Leah & Joseph
For your information: https://www.runx1-fpd.org/runx1-patients-and-family/#what-is-runx1fpd
Organizer
RUNX1 Research Program
Beneficiary

