The Calliope Joy Foundation

Cures, community & cupcakes for kids with leukodystrophy. 🧁
Venmo: CalliopeJoy

[The Calliope Joy Foundation @caljoyfndtion]

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. 💜🧁

[The Calliope Joy Foundation @caljoyfndtion]

This #TakeCareTuesday, 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: https://t.co/3bDpmhGGcy

[The Calliope Joy Foundation @caljoyfndtion]

This Leukodystrophy Awareness Month, learn more about MLD and the work being done to help support those affected by it! Learn more about MLD and actions you can take to advocate for leukodystrophy awareness by visiting our website at https://t.co/vmUv3u102b.

[The Calliope Joy Foundation @caljoyfndtion]

It’s Leukodystrophy Awareness Month! #DidYouKnow that in 2024, there was a breakthrough in MLD treatment with the approval of Lenmeldy? Learn more about MLD treatment and leukodystrophy awareness by visiting our website at https://t.co/vmUv3u102b

[The Calliope Joy Foundation @caljoyfndtion]

Support families facing MLD during Leukodystrophy Awareness Month! We need your support so we can help every eligible MLD patient receive the treatment they need. Learn more information, get involved with MLD advocacy, and donate today at the link below.
https://t.co/RM9sV4A1pO

[The Calliope Joy Foundation @caljoyfndtion]

This #TakeCareTuesday, we’re highlighting MLD medical resources for newly diagnosed families from Cure MLD. There are several hospitals where you can work with specialists dedicated to patients with MLD. For more information, visit the link below: https://t.co/rnJHo8bM7M

[The Calliope Joy Foundation @caljoyfndtion]

This month, we’re recognizing Leukodystrophy Awareness Month! TCJF co-founder and MLD advocate Maria Kefalas reflects on Cal’s battle with leukodystrophy and the impact of Cal’s legacy. To learn more about MLD advocacy and awareness, visit our website at https://t.co/vmUv3u102b.

[The Calliope Joy Foundation @caljoyfndtion]

September is Leukodystrophy Awareness Month! Leukodystrophy affects approximately every 1 in 7,000 individuals. MLD is only one of over 50 different types of leukodystrophies and is considered a rare disease. Click here to learn more about MLD advocacy:
https://t.co/vmUv3u102b

[The Calliope Joy Foundation @caljoyfndtion]

Today is #NationalGriefAwarenessDay. Our hearts are with those who are grieving today & who continue to feel the loss of a loved one. The grieving process is complex, so be kind to yourself and remember that although everyone experiences grief differently, you are never alone. 🤍

[The Calliope Joy Foundation @caljoyfndtion]

On today’s #TakeCareTuesday, learn more about the Cure MLD family support program. This program for newly diagnosed families offers one-on-one support with family support coach Dr. Al Freeman. Learn more about the program and sign up below:

https://t.co/nPPuHfONZn

[The Calliope Joy Foundation @caljoyfndtion]

Rare disease caregivers often face a higher level of intense caregiving activities, leading to caregiver stress and burnout. On today’s #TakeCareTuesday, here are some helpful resources from the Caregiver Action Network for rare disease caregivers: https://t.co/w0NN1Oss7K

[The Calliope Joy Foundation @caljoyfndtion]

Thank you to those who attended the MLD Community Meeting this weekend at the @UlfUnited Family Conference! We look forward to coming together in the future for more MLD advocacy and education efforts!

[The Calliope Joy Foundation @caljoyfndtion]

We’re only ONE WEEK away from the @UlfUnited Family Conference! Register today for virtual access to the event and join us for 3 days of educational experiences for families affected by leukodystrophy.

To register for this year’s event, visit https://t.co/4qxN9cSqNw.

[The Calliope Joy Foundation @caljoyfndtion]

Are rare diseases really so rare? In the United Kingdom, 1 in 17 people are affected by a rare condition. Read more about the impact of leukodystrophy across the pond in this recent article sponsored by Orchard Therapeutics.
https://t.co/I50j8KixCc

[The Calliope Joy Foundation @caljoyfndtion]

Mark your calendars! Join us at the 2024 @UlfUnited Family Conference in Itasca, Illinois, from June 28-29. This annual event provides a platform for education and advocacy for families affected by leukodystrophy.

Learn more about the conference at https://t.co/4qxN9cSYD4

[The Calliope Joy Foundation @caljoyfndtion]

We had a wonderful evening on Friday at the 2024 Cupcake Gala! It was a joy to be able to come together and celebrate the milestones and accomplishments of the leukodystrophy community. Thank you to all who joined us this year! 🧁🎉🧡

[The Calliope Joy Foundation @caljoyfndtion]

We’re only 5 DAYS away from our final Cupcake Gala. We’ll be joined by special guest Brandon Graham for an evening with a cocktail-style dinner, speakers, auction, and of course, cupcakes! Join us for one final celebration in Philadelphia. Register now: https://t.co/KcXaj217hr.

[The Calliope Joy Foundation @caljoyfndtion]

We are only ONE WEEK AWAY from the final Cal’s Cupcake Gala. We hope you’ll join us for this final event as we celebrate a cure and a brighter future for children just like our Cal. Learn more and register at the link below. 🧁🎉

https://t.co/KcXaj217hr.

[The Calliope Joy Foundation @caljoyfndtion]

Want a chance to own an autographed jersey or two lower-level tickets and pregame tunnel passes to the Eagles vs Cowboys game? These items will be available to bid on at this year’s Cupcake Gala! Make sure to secure your spot today at the link below. 💚🦅

https://t.co/KcXaj217hr

[The Calliope Joy Foundation @caljoyfndtion]

Reminder: Cal’s Cupcake Gala is exactly three weeks away! 🧁We’re looking forward to an evening of connecting with our leukodystrophy community in honor of Cal and celebrating the Leukodystrophy Center of Excellence at CHOP. We can’t wait to see you there!
https://t.co/KcXaj217hr