Let's Fight For Riaan!
Donation protected
JUNE 2021 - Thank you for your generous support! We are pleased to announce that in a little over three months since Riaan's diagnosis, we have officially launched our research organization - Riaan Research Initiative - at www.riaanresearch.org.
We are shutting down our GOFUNDME and ask that you make a fully TAX-DEDUCTIBLE donation to our non-profit organization. 100% of the money will be used to further scientific research and development of a treatment for Riaan and others. We need to raise ONE MILLION DOLLARS by December 2021 to launch a gene therapy program.
DONATE: www.riaanresearch.org/donate/
READ OUR LAUNCH STATEMENT: https://riaanresearch.substack.com/p/launch-riaan-research-initiative
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I am setting up a GoFundMe for my sweet nephew Riaan, a beautiful, smart, inquisitive little baby boy who loves reading, tickle torture, and goofing off with his loved ones, and his parents, Gurjot Kaur ("Jo"), and Richie. Riaan was shockingly diagnosed with a rare, fatal, and devastating neurodegenerative genetic disease. The average life expectancy for kids with Riaan's condition is 3-5 years. Our family has spoken with many experts, including physicians and researchers, and there are no cures or treatments in sight, as is the case with many rare and progressive genetic diseases. The only thing we can do is to manage his many symptoms and provide therapies (like physical therapy, occupational, vision, and speech). The symptoms of this horrific disease include vision and hearing loss, developmental delays, mobility, speech, and feeding issues, respiratory problems, liver and kidney disease, cardiovascular issues, seizures - in short, there are no organs or body systems not adversely impacted by this "book of horrors" disease.
Riaan's treatment is deeply specialized, and there are only a handful of experts in the U.S. that have experience with his particular genetic condition. We are planning to take him to Boston, Minnesota, and potentially travel to other locations for treatment to manage his symptoms. My sister, Jo Kaur (@SikhFeminist), has been on leave from work since Riaan was born, and will continue to be on leave to manage Riaan's care and therapies. My sister, Jo, and brother-in-law, Richie, - Riaan's parents - are exploring research opportunities to push for a cure for Riaan and other similarly impacted children, which includes connecting with researchers/physicians and impacted families, gathering information about genetic disorders, and building the base and network needed to launch an effort.
We kindly ask for your assistance to help Riaan and his parents cover upcoming travel, out of pocket/out of state medical expenses, administrative and legal costs for any organizational efforts we may pursue, research expenses related to Riaan's treatment, and/or other expenses as we coordinate Riaan's care and begin the long and urgent journey to seek a cure - a miracle - for our family's sweet boy. We also ask for your prayers, and for Riaan to be included in your Ardas.
Gur Fateh.
#PrayForRiaan
We are shutting down our GOFUNDME and ask that you make a fully TAX-DEDUCTIBLE donation to our non-profit organization. 100% of the money will be used to further scientific research and development of a treatment for Riaan and others. We need to raise ONE MILLION DOLLARS by December 2021 to launch a gene therapy program.
DONATE: www.riaanresearch.org/donate/
READ OUR LAUNCH STATEMENT: https://riaanresearch.substack.com/p/launch-riaan-research-initiative
****
I am setting up a GoFundMe for my sweet nephew Riaan, a beautiful, smart, inquisitive little baby boy who loves reading, tickle torture, and goofing off with his loved ones, and his parents, Gurjot Kaur ("Jo"), and Richie. Riaan was shockingly diagnosed with a rare, fatal, and devastating neurodegenerative genetic disease. The average life expectancy for kids with Riaan's condition is 3-5 years. Our family has spoken with many experts, including physicians and researchers, and there are no cures or treatments in sight, as is the case with many rare and progressive genetic diseases. The only thing we can do is to manage his many symptoms and provide therapies (like physical therapy, occupational, vision, and speech). The symptoms of this horrific disease include vision and hearing loss, developmental delays, mobility, speech, and feeding issues, respiratory problems, liver and kidney disease, cardiovascular issues, seizures - in short, there are no organs or body systems not adversely impacted by this "book of horrors" disease.
Riaan's treatment is deeply specialized, and there are only a handful of experts in the U.S. that have experience with his particular genetic condition. We are planning to take him to Boston, Minnesota, and potentially travel to other locations for treatment to manage his symptoms. My sister, Jo Kaur (@SikhFeminist), has been on leave from work since Riaan was born, and will continue to be on leave to manage Riaan's care and therapies. My sister, Jo, and brother-in-law, Richie, - Riaan's parents - are exploring research opportunities to push for a cure for Riaan and other similarly impacted children, which includes connecting with researchers/physicians and impacted families, gathering information about genetic disorders, and building the base and network needed to launch an effort.
We kindly ask for your assistance to help Riaan and his parents cover upcoming travel, out of pocket/out of state medical expenses, administrative and legal costs for any organizational efforts we may pursue, research expenses related to Riaan's treatment, and/or other expenses as we coordinate Riaan's care and begin the long and urgent journey to seek a cure - a miracle - for our family's sweet boy. We also ask for your prayers, and for Riaan to be included in your Ardas.
Gur Fateh.
#PrayForRiaan
Organizer and beneficiary
Minou Kaur
Organizer
Jupiter, FL
Gurjot Kaur
Beneficiary