Canavan Disease Research

01/09/2026

Restorative Yoga in memory of Maxie Randell
If you feel aligned to support our efforts, donations are welcome at www.curecanavan.org
or www.maxieshope.org 💙

10/06/2025

October is Canavan Disease Awareness Month 🩷💙
CureCanavan.org

07/17/2024

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

07/01/2024

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 💙

04/18/2024

I don't think there is any pain worse than losing a child. The only way I can survive is by keeping Maxie's spirit alive by spreading kindness and doing things to help other people in his name. We installed our 3rd accessible park bench today in memory of Maxie on the 4th anniversary of the day he left this earth.

While still poised to fund medical research, our charitable organization is currently dedicating more resources to promote awareness about Canavan disease within the general population and provide help to our local park district as they update facilities to comply with current ADA requirements. This is an immediate area of need and a cause that's close to my heart because of the difficulty I faced raising a child who used a wheelchair in areas where there was a lack of accessible facilities.

Future plans include accessible swings and continuing to update benches that aren't fully accessible to people who use wheelchairs or other mobility aids.
Thank you to everyone for helping to launch this project with MaxiesHope.org and CureCanavan.org
Thank you to every single person who has supported our organization and mission to help families affected by Canavan disease, increase awareness, and bring accessible seating to more people in need. Thank you to for hosting a special meditation in honor of Maxie for Rare Disease Day on February 29. Donations from that event were used to help sponsor this bench.

If you're interested in supporting our mission, finding out more information, or making a donation, please visit maxieshope.org or curecanavan.org
I'm leading "Flow for a Cause" yoga classes for free in honor of Maxie as well. If you're interested in hosting a donation based event at your location, contact me directly.

03/30/2024

On Thursday, April 18th, at 1:00, we'll be installing another accessible bench through Canavan Research Illinois/Maxie's Hope at a park in Buffalo Grove. It's going on the concrete pad shown in the bottom middle picture. This will be the third bench we've sponsored in Maxie's memory.

April 18th will be exactly four years without our precious Maxie, and to honor his memory, we've committed to installing a total of four ADA compliant park benches in 2024, each one represents a year that we've had to live without Maxie, but we hope by spreading kindness in his name we can honor his amazing life in a way that would make him happy and proud.

Everyone is welcome to join us at the park, but since it's the middle of a weekday I'll also be hosting an open house memorial at my home on Friday, April 19th from 4pm till 10pm. Light dinner, snacks, drinks, and a bonfire because that was one of my Maxie's favorite things. If the weather doesn't cooperate, we'll be inside.

Let me know if you need the park location or my address for family and friends.
www.maxieshope.org

10/11/2023

🚨Important announcement for our community‼️
from United Leukodystrophy Foundation
Link to full release at the bottom!❤️

"On October 1, the International Classification of Diseases - Tenth Edition began the use of 12 new codes that better define a group of leukodystrophies which will accelerate the way that research, treatment, and diagnosis takes place around the world. Dr. Joshua Bonkowsky and Monika Baker (PhD and MD Student) of University of Utah Health are the champions of these codes being approved, and we are thrilled to have them presenting a webinar on what exactly these codes mean to the community. "

FOR IMMEDIATE RELEASE Today marks a huge leap forward for the leukodystrophy community with the adoption of twelve new diagnostic definitions through the International Classification of Diseases – Tenth Revision. The ICD-10 code system is used by the health field to classify diagnoses, symptoms, a...

10/08/2023

October is Canavan Awareness Month 💙💜

10/01/2023

"There's no treatment, no cure, and nothing you can do. Take your baby home, don't get attached to him, and look for a pediatric nursing home so your family can move on."
These are the words I heard right after learning that the beautiful baby in my arms was born with a fatal disease called Canavan. I'd never even heard of it before. I fired that doctor immediately and decided instead to fight for my baby's life.

I needed someone to help, so I started raising money to privately fund medical research and lobbied Congress along with every politician and head of every legislative committee that would hear my story in an effort to encourage the government to invest in funding for research into Canavan disease. Maxie's beautiful smile and the palpable desperation of our family's need to save his life helped melt hearts and move mountains on this marathon race for treatment.

We had to try and stop the relentless progression of Canavan disease to buy time while we worked on a cure, but Canavan is not like other diseases because no one had even heard of it. Awareness became not just a component of our fight. It became the first and most important step.

It's an additional layer of stress, work, and effort to first have to educate anyone you're asking for help about why their help is so urgently needed. Maxie's grandparents in Florida designed the first Canavan Awareness ribbon and sold pink and blue satin lapel pins at their Moose Lodge in Florida in 1998. That's been the Canavan Awareness ribbon for over 25 years. Awareness has, and will always be, the first and most critical part in my continuing mission to help discover treatments and, one day, the cure for Canavan disease. Even now, most people have still never heard of Canavan disease.

Everything I do is dedicated to Maxie’s beautiful memory. I continue on this path towards a cure guided by my son's legacy of hope, love, and inspiration. We began this journey together, and now I walk alone, holding his memory close, driven by inspiration to help those still clinging to life and fighting for those who are yet to be born.
💜💙


maxieshope.org
curecanavan.org

09/12/2023

Information from City of Hope

"Volunteers needed for blood samples from Canavan disease patients

City of Hope has been awarded a grant from the National Institutes of Health (NIH) to develop a human iPSC-based cell therapy for Canavan disease. We would like to get blood samples from Canavan disease patients to assess the process of making cell therapies. We ask for less than a tablespoon of blood from Canavan disease patients. If you are interested in having your child as a volunteer, please contact Yanhong Shi ([email protected]).
Whom are we looking for?
● Canavan disease patients: Age: ≥ 6 months
What does the trial involve?
● Screening for study eligibility and signing a consent form.
● If eligible, less than a tablespoon of blood will be drawn.
● Blood will be used to qualify the cell therapy manufacturing process
Duration of Participation
● Your active participation on this study is expected to last about 1 to 1.5 hours (1 visit).
How risky is this procedure?
● The most common risk of blood drawing is a mild pain at the needle insertion site.
Compensation
● Participants will receive compensation of $50."

08/09/2023

The new website is live! This project was an exhausting labor of love, but the result is exactly what I wanted and I know Maxie is smiling!

Visit the link below and let me know what you think!
www.maxieshope.org 💙

With hope,
Ilyce Randell

07/27/2023

Workshop session recording is available on the ULF YouTube channel. 💕✨️

Disclaimer: The views and opinions expressed in this video are those of the individual(s) featured and do not necessarily reflect the official stance or view...