Canavan Research Illinois
Canavan Research Illinois (CRI) is the largest and oldest international charitable organization devoted to helping families affected by Canavan disease. We are a nonprofit corporation and 501(c)(3) public charity based in Illinois. The organization was created by an affected family in an effort to help unite and advocate for the patient community. CRI was established in April 2000 to meet a critical need to support medical research to treat, cure, and improve the quality of lives of all children battling Canavan disease, a rare fatal genetic neurological disorder.
Canvavan Research Illinois is also known as Canavan Disease Research. Canavan Disease Research is the international division of Canavan Research Illinois. CRI is leading the fight to cure Canavan disease through private fundraising efforts, networking affected families and launching the first international patient registry.
Canavan disease is a rare inherited genetic disorder that damages the ability of nerve cells (neurons) in the brain to send and receive messages. This disease is one of a group of genetic disorders called leukodystrophies.
Leukodystrophies disrupt the growth or maintenance of the myelin sheath, which is the covering that protects nerves and promotes the efficient transmission of nerve impulses.
The 21st Annual Canavan Charity Ball will be held October 19, 2019 at the Chicago Marriott Hotel in Schaumburg Illinois featuring dinner, dancing and silent auction.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Canavan Disease
Laser Pointer and Letter Board Lets a Boy with Canavan Disease Finally Speak to his Parents
Canavan disease is an isolating condition. It’s a rare disorder caused by a genetic mutation that can be passed on in families. It damages nerve
Parents Fundraise for Canavan Research to Save Their Children’s Lives
At six years old, Benny was unable to sit up, roll over and scoot like other babies his age. Missing all the major milestones, his
Brooklyn Family Raises Money for Gene Therapy for Children with Canavan Disease
Two children from a Brooklyn family were born with an ultra rare genetic disease called Canavan disease. Their parents’ research revealed that gene therapy could
Help this Family Raise Funds for Child Fighting Devastating Rare Illness
Cedar Rapids, Iowa is rallying to help a one-year-old girl who has been diagnosed with Caravan disease, a devastating disorder that often leads to premature
Raising Money for Gene Therapy for Twins with Canavan Disease
Canavan disease is a type of leukodystrophy frequently found in the Ashkenazi Jewish population. It’s a rare genetic condition which is ultimately fatal. It’s all caused by
The Cure Rare Disease Foundation is Trying to Change the “One Size Fits All” Approach Toward Treatment
The Cure Rare Disease Foundation The Cure Rare Disease Foundation‘s mission is to increase collaborative efforts between researchers in order to accelerate the development of customized
