Maxie's Hope: Canavan Disease Research and Support
Our Story
I began my mission to save the life of my son and help all families affected by Canavan disease, and hopefully, one day, discover the cure.
After learning of Maxie's fatal diagnosis of Canavan disease on March 6th, 1998, my mom and I knew we were going to do whatever it took to save his life. We geared up for a marathon into this new space of rare disease research and experimental treatment because we couldn't bear to lose Maxie. At the time he was diagnosed, he was only four months old, but Canavan is a progressive disease, so we knew this was a race against time.
Together, my mom and I created Canavan Research Illinois to raise funds for research and help families. Our mission was clear and simple. We set out to save the lives of children born with Canavan disease by aggressively funding medical research that showed the potential to help as many children as possible. The desire to save the life of my son Maxie was the driving force behind my personal mission. We started as a small local charity with some borrowed money for expenses. Oftentimes, we paid out of pocket for many things in order to direct as much funding as we could directly to research teams. Although I desperately wanted to use Maxie's name in the name of our organization, we ultimately chose a name that reflected our mission to help all affected children.
We stayed true to our mission by helping children and families all over the world through our fundraising, advocacy, and lobbying efforts. Our international reach expanded, and we became the world's largest organization devoted solely to Canavan disease. I set up the first international database of Canavan patients in 2016, and it remains the largest patient registry for CD today. We never dreamed that our small, family-driven grassroots effort would become the leader in Canavan disease research, and we were no longer a small local charity.
Our goal was to help all children and families, regardless of where they lived or whether or not they were interested in fundraising. We worked tirelessly to cultivate a donor base from outside the affected community by finding people interested in financially supporting our mission through donations of all sizes, writing for grants, and leveraging connections to secure large sponsorships. Many families still choose to host fundraising events in support of our efforts, and of course, all help is very much appreciated but never mandatory because affected families already have so many challenges.
For the past three years, I have struggled every single day to survive without my beloved Maxie here by my side. He was always my inspiration to keep moving forward with my work and mission. We started on this path together and continued even after he was no longer a candidate for gene therapy or any other invasive experimental medical procedure. This didn't deter Maxie because he knew that thousands of people around the world were following his journey and that his life, happiness, big bright smile, and pure joy at being alive continued to give people hope when they were facing challenges. Maxie was committed to helping others, and he wanted to be part of letting people know about Canavan disease and help discover new treatments and one day the cure.
I now do all these things without Maxie by my side. I will always carry him in my heart, and he is still my inspiration. His memory gives me hope when things seem impossible. Our organization has been going through some internal reorganization since the global pandemic in 2020. And with so many pharmaceutical companies involved in sponsoring research, there is less of a need for families and charitable organizations to pay for medical research, but there are other areas of family service in desperate need of funding, and Maxie's Hope was created to meet those needs.
In order to keep growing our organization, it has become necessary to pivot some of our focus toward underserved areas. We will always have funding available for any potential research projects that come our way, but since most people have still never heard of Canavan disease, we are expanding our community outreach programming to increase awareness about Canavan disease.
I extended CRI to create Maxie's Hope in order to directly support community programs and families. Our events and community services are aimed at increasing awareness and educating people about Canavan disease, both inside and outside the affected population. This newest endeavor will help Maxie's legacy continue to grow and help us educate more people about Canavan disease. We've decided to start this project locally and grow from there.
Community outreach for 2023 is in full swing, literally! I have personally hosted several events in partnership with the yoga community because I also teach yoga. These events were at studios in Barrington, Deerfield, Highland Park, and Wilmette. The donation-based classes helped reach many new people who had never heard of Canavan disease before. They were all very successful in increasing awareness about Canavan disease while raising funds in honor of Rare Disease Day and Maxie. Bringing Maxie's Hope and awareness to a whole new community of people is now an ongoing project, and my goal is to keep increasing our reach and forming partnerships within the rare disease space.
We're installing an accessible bench at a playground right near our local headquarters. It's at a park where I used to take Maxie while he was still alive. The bench has a plaque with a picture of Maxie and will serve to let more people know about Canavan disease.
Maxie was a medical pioneer who received gene therapy twice. He passed away unexpectedly on April 18th, 2020, but his legacy of hope continues as we move forward on our mission to help families affected by Canavan. Through our ongoing patient advocacy and community outreach, we will keep Maxie's spirit alive by spreading kindness, doing good work, and making him proud. Maxie's legacy will continue because I know that's what he would want. When it gets rough or seems impossible, Maxie's beautiful smile and love are always right here to help guide me, and Maxie's Hope continues to be my inspiration and motivation to push forward on the mission we started together so long ago.
If you're not already following us on social media, our Facebook pages are called,
"Canavan Disease Research" and "Maxie's Hope."
To make a tax-deductible donation in support of our mission and programs, please visit our website, CureCanavan.org. There's a link at the bottom of the home page. Checks can be mailed to:
Canavan Research Illinois
Maxie's Hope
POB 5823
Buffalo Grove, IL 60089
*Written to Canavan Research with "Maxie's Hope" in the memo.
With hope,
Ilyce Randell
Director of Patient Advocacy and Cofounder
Canavan Research Illinois
www.curecanavan.org
https://www.facebook.com/CanavanResearchIllinois/
Head of Community Services
Maxie's Hope
maxieshope.org
https://www.facebook.com/Maxie4Ever/
Consultant, Advisor, and SME for all stakeholders in the Canavan and rare disease space
Creator and Manager
International Patient Registry for Canavan Disease
https://connect.invitae.com/en/?org=Canavan
