by Jo Kaur, Chair and Founder of Riaan Research Initiative
It’s Giving Tuesday, otherwise known as the global day of generosity! Riaan Research Initiative is an entirely volunteer-driven effort, run by impacted parents and allies. As I write this message, Riaan is crying, demanding my attention, not happy with his auntie who is watching him. Unfortunately, I can barely walk or sit without pain, due to a medical procedure I had a few days ago (not to worry reader, I paused typing, slowly made my way to comfort our sweet boy, and now he’s all smiles). Despite all of this, we know this work is critical and we are trying our best to get the message out and continue to build a community of people who want to see a treatment developed for Cockayne Syndrome. And then there is the omnipresent clock, ticking above our children and our dreams, reminding us that we need to move fast, and strategically.
Our mission is seeing through the development of treatments for Cockayne Syndrome. Before our organization was launched, there were no formal efforts or programs designed to develop treatments for Cockayne Syndrome with the goal of getting to a clinical trial as fast as humanly possible. To date, we have launched a gene replacement therapy, and a drug repurposing program with other research plans on the horizon, including more particularized drug screens utilizing Cockayne Syndrome-specific assays and read-outs with CS disease experts.
Riaan Research Initiative also recently partnered with Sanford CORDS to create a detailed patient registry for Cockayne Syndrome so that we can gather more information to share with parents and researchers. Too often, parents, in particular newly diagnosed parents, are in the dark about what may happen and what to expect. By sharing de-identified data, we hope to de-mystify some of these experiences while remembering that every child is different, and there is symptom variability. We also hope to entice more researchers to study this ultra-rare disease to aid in our efforts to develop therapies.
In a nutshell, we are creating a plan to combat Cockayne Syndrome from multiple angles, and in order to see this work through the finish line, we need our loving community to step up. In order to even be on the field to play the game, the work of scientific research and drug development requires significant resources, in the millions of dollars. But we’ll fight the good fight because our children are worth it.
In that vein, we are excited to announce that our #Match4Riaan campaign has made tremendous strides in the last few weeks! We have only about $20,000 left to raise to fully max out our incredibly generous $100,000 matching fund. Our goal today is ambitious - raise that full amount on #GivingTuesday!
Will you chip in (and a special thanks to those chipping in for a second or third time), and share this message with at least ten people in your networks? Your generosity and kindness truly creates miracles. No donation is trivial, no donation too small.
Truly grateful,
Jo
Donate: https://www.classy.org/campaign/riaan-birthday-match-campaign/c369158