
Canavan Research Illinois
364362105
BUFFALO GROVE, IL 60089
canavanresearch.org
CureCanavan
CanavanResearchIllinois
Canavan Research Illinois
Canavan Research Illinois (CRI) is a nonprofit organization and 501(c)(3) public charity based in Illinois, dedicated to funding research and promoting awareness of Canavan disease, a rare genetic neurodegenerative disorder. Established in April 2000 by an affected family, CRI aims to support medical research to treat, cure, and improve the quality of life for children affected by Canavan disease worldwide[1][2][5].
Mission and Objectives
The primary mission of Canavan Research Illinois is to direct funding toward research efforts focused on developing therapies to treat and ultimately cure Canavan disease. Alongside supporting scientific research, CRI works to network families affected by the disease, fostering an engaged community that can accelerate progress toward clinical treatments. These efforts have resulted in significant milestones, including the initiation of three gene therapy clinical trials and the development of a combination of medicines known as the "Canavan Cocktail," which has shown potential in slowing disease progression in some children[4].
Background on Canavan Disease
Canavan disease is a rare, inherited genetic disorder classified within a group of conditions called leukodystrophies, which affect the growth or maintenance of the myelin sheath—the protective covering of nerve fibers essential for efficient nerve signal transmission. The disease is caused by mutations in the ASPA gene located on chromosome 17, which encodes the enzyme aspartoacylase. This enzyme is responsible for breaking down N-Acetyl Aspartic Acid (NAA) in the brain. Children with Canavan disease typically exhibit extremely high levels of NAA, detectable through urinalysis, though DNA testing remains the most accurate diagnostic method[4][5].
Activities and Impact
CRI is recognized as the largest and oldest international charitable organization focused on assisting families affected by Canavan disease. The organization leads efforts to raise private funds for research, maintain patient registries, and provide support and advocacy for the patient community. CRI also organizes community events such as the annual Canavan Charity Ball to foster awareness and financial support for research initiatives[5].
Notable Achievements
- Funding and support for multiple gene therapy clinical trials targeting Canavan disease.
- Development of experimental therapeutic approaches such as the "Canavan Cocktail."
- Establishment of the first international patient registry for Canavan disease.
- Building a global network of families and researchers working collaboratively to combat the disease[4][5].
Through its comprehensive approach combining research funding, family support, and advocacy, Canavan Research Illinois plays a critical role in the ongoing quest to find effective treatments and a cure for Canavan disease.
[1] https://www.canavanresearch.org [2] https://rarediseases.org/organizations/canavan-research-illinois/ [3] http://www.canavan.org [4] https://www.canavanresearch.org/about.html [5] https://patientworthy.com/partners/canavan-research-illinois/
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News

Flow for a Cause in Buffalo Grove at Sky Fitness 💙💛 (fb)

I was just approached with a beautiful idea for Maxie's Hope. (an extension of Canavan Research Illinois) Many of you know that we've been installing accessible park benches in honor of Maxie’s memory to increase public awareness about Canavan disease. We're expanding this to include a Wind Phone at our next location. It's a very beautiful project, and the idea is to provide space at peaceful locations where people can talk to loved ones who have passed away. Unfortunately, this cause is much too close to my heart after losing my precious son. Even before losing Maxie, I had met dozens of families who had lost their own precious children too soon. We'll be installing an accessible bench next to the phone. This is an example of one. It will be similar and wood since it's going to be at the Mike Rylko Community Park, outside the Nature Classroom in Buffalo Grove. I have a meeting tomorrow to look at the location, and I'll share more information when it's available! If you're interested in making a donation to help support this ongoing project or would like more information, please visit www.maxieshope.org 💙 (fb)

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About the organization
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Welcome Canavan Research Illinois CRI is a nonprofit corporation and 501c3 public charity based in Illinois. We were 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 Reasearch. Canavan Disease Research is the international division of Canavan Research Illinois.