The Calliope Joy Foundation

02/19/2025

After 12 incredible years, The Calliope Joy Foundation Co-Founder Maria Kefalas shares an important update as we pause operations to reflect on how best to support this new era for MLD treatment. Read the full message below. 💜🧁

02/17/2025

Please consider a gift to help baby Nicholas make the long journey from Alaska to Philadelphia so he can receive a life-saving gene therapy for metachromatic leukodystrophy. Nicholas will be the first child to receive Lenmeldy at the CChildren's Hospital of Philadelphia

Hi, I am Elizabeth Anaver, mother of this beautiful boy, Nicholas Anaver. He was di… Elizabeth Anaver needs your support for Help Nicholas Fight MLD with Love

11/13/2024

Celebrate Cal!

Cal would have been 15 years old on December 23rd, 2024. On March 18th, 2024, the FDA approved Lenmeldy a miraculous gene therapy to treat Cal's disease. By 2025, we expect federal authorities to approve newborn screening so millions of babies will be screened at birth for MLD. The Children's Hospit...

09/26/2024

Four years ago, Anna James learned that her son Emmanuel had MLD. Since MLD is genetic, her youngest child, Samuel, also needed to be tested. The results came back and confirmed the worst. At just one month old, Samuel, who looked like a perfectly healthy baby boy, was diagnosed with the same fatal condition as his older brother. Emmanuel’s condition progressed very rapidly. Eventually, he lost the ability to walk, talk, eat, and more.

Before his passing on July 1st, 2022, Emmanuel had been in the hospital for almost a year. His younger brother, Sammy, received a bone marrow transplant when he was four months old to try and slow the progression of his MLD. MLD has put tremendous strain on the James family between long hospital stays, frequent trips across the state, and the financial burden of caring for two medically complex children. Learn more about how you can help families like Emmanuel and Sammy’s in the fight against MLD by visiting the link below: https://www.classy.org/campaign/the-calliope-joy-foundation/c259911

09/25/2024

The United Leukodystrophy Foundation is hosting a virtual caregiver support group this Sunday, September 29th! The support group provides an opportunity to connect with other leukodystrophy caregivers and express your feelings in a confidential setting with peers. Learn more about it and register here:

Register here  

09/24/2024

This , we are sharing PatientWing Caregiver’s Handbook for Managing Rare Diseases. It offers mental health resources, support groups, books, webinars, and websites for caregivers to lean on. For more information:

Maintaining your well-being is important as you navigate rare disease caregiving. Here’s a list of resources for you to lean on.

09/23/2024

This Leukodystrophy Awareness Month, learn more about MLD and the work being done to help support those affected by it! There are around 3,600 babies born each year with the rare disease. MLD impacts the central nervous system and leads to the deterioration of motor skills and cognitive functions over time. Learn more about MLD and actions you can take to advocate for leukodystrophy awareness by visiting our website at https://www.thecalliopejoyfoundation.org/.

09/19/2024

When Bryant was 2.5 years old, he was diagnosed with MLD. After his diagnosis, Bryant's condition deteriorated rapidly and within a week, he lost the ability to walk and eat on his own. Bryant’s MLD was too far progressed for any intervention and within 11 months of diagnosis, he passed away. According to his mom, Raynea, “If would have been available to Bryant at birth, it would have expedited the steps needed to obtain a diagnosis.”

Learn more about how you can help families like Bryant’s in the fight against MLD by visiting the link: https://www.classy.org/campaign/the-calliope-joy-foundation/c259911

09/17/2024

On today’s , we are highlighting wellness tips for caregivers. Caregiving for someone with a rare disease can be rewarding but stressful. The demands and responsibilities of this role can take a toll on your physical well-being, relationships, and mental health. MediFind has tips for stress relief, warning signs for caregiver burnout, and other helpful resources. For more information, click here:

When it comes to your health, nothing is more valuable than time. Quickly find the best doctors, latest medical advances, and active clinical trials with MediFind. Our goal is to dramatically reduce the amount of time and frustration you spend finding the right healthcare, so you have the best possi...