St George Health Raising Money for Research into Rare Diseases This Year!
One of our Osteos, Eddie has a 3 year old nephew, Caleb who was diagnosed in April last year with Infantile Neuro Axonal Dystrophy (INAD), a disorder of the nervous system characterised by abnormalities of nerve endings within the brain and spinal cord and outside the central nervous system.
INAD is a very rare and catastrophic disease. It affects about 1 in a million kids. The disease became apparent in Caleb after he turned 1. He slowly lost the ability to crawl, sit and hold his own weight up. As the disease progresses Caleb will lose his vision and his ability to eat and swallow. Children with INAD have a life expectancy of between 5 and 10 years old. Caleb turns 4 this year.
As a rare disease it does not get much publicity for research funding, and what money can be sourced is often raised by those who have been personally affected or by their families. There are over 8000 known rare diseases. But there is hope. New techniques for genetic therapies mean that one day, possibly within the foreseeable future, kids like Caleb might be offered real treatments that reverse the effects of rare diseases or even cure them. This is much more of a possibility now than ever before because of advances in gene technology.
So to cut a very long story short, St George Health is supporting Eddie and trying to do our bit on Caleb’s behalf to help other kids who one day might find themselves in his situation. We need your help.
To raise money towards finding a cure for INAD Eddie has foolishly committed to swim the 2.4k Coogee Island Challenge in April. He will be doing his best to avoid drowning.
We are looking for sponsors, so if you can chip in a few dollars that would be incredible. You can also pick up a bottle of water in the clinic for a gold coin donation. The money raised will go to the NBIA (Neurodegeneration with Brain Iron Accumulation) disorders association to fund research into a cure for INAD. There is a link at the bottom of this blog if you want to donate.
Please spread the word about this fundraiser as much as you can. If you want to join in, or have an idea about doing your own fundraiser then get in touch with the clinic. We can give you some ideas and encouragement.
Caleb is a remarkable little fella, and everyone who has met him will agree. It would mean so much if we could make something good out of something this bad. He doesn’t deserve INAD. No one does.
Let’s do something about it!
(Please note this is a US based charity & donations are made in US dollars).