I am writing to you with a heart full of gratitude and appreciation. When we founded The Calliope Joy Foundation in 2013, our mission was to drive awareness, fund research, and support families affected by leukodystrophy. Thanks to your unwavering generosity and advocacy, we have seen what once seemed impossible become a reality. With this year’s FDA approval of gene therapy treatment for Cal’s disease: metachromatic leukodystrophy (MLD). We have reached a milestone that once felt like a distant dream.

This remarkable achievement means that children diagnosed with MLD now have a second chance at life, offering a breakthrough that has the power to change lives and bring hope where there once was none. It is a victory for every family who has faced this devastating diagnosis, and it marks a turning point in the fight against leukodystrophies. With this success, The Calliope Joy Foundation will be pausing our operations as we
assess and reflect on our next steps. For the time being, we are stepping back from active fundraising and programming to determine how we can best support this new chapter for MLD research and treatment.

During this pause, please know that my commitment to the leukodystrophy community remains as strong as ever. If you have questions or need to reach me, I will always welcome your outreach.

If you would like to continue supporting efforts in MLD and leukodystrophy research, I encourage you to direct donations to the Leukodystrophy Center at the Children’s Hospital of Philadelphia (CHOP), which remains at the forefront of leukodystrophy research, care, and innovation. You can make a gift directly here.

The past twelve years have been nothing short of extraordinary. Together, we have raised critical funds, helped families gain access to life-changing treatments, and built a community of support and hope for those affected by leukodystrophy. Our collective efforts have changed lives, and I am forever grateful for each and every one of you who made this possible.

Thank you for being part of this journey and believing in our mission. While this is a pause, it is not a goodbye. It is a moment to reflect on what we have accomplished together and what the future may hold.

With deepest gratitude,

Maria Kefalas
Founder, The Calliope Joy Foundation