Massachusetts Recognizes Leukodystrophy Awareness Month & Lights Up for Leukodystrophy
September 2nd, 2022 The Longfellow Bridge in Boston, MA, lit up in blue today in honor of Leukodystrophy Awareness Month. Just days...
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curemld
- Mar 25, 2022
- 2 min
Inspirational Child with MLD, Calliope Joy, Passes Away
Calliope Joy Carr defied all odds by living with rare genetic disease for 12 years (Bala Cynwyd, PA) — Calliope ‘Cal’ Joy Carr, 12, who...
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curemld
- Sep 22, 2021
- 2 min
Jim Flynn Runs a Marathon to Cure MLD
September 22, 2021 | MR Photo: Jim's daughter joins him to a run a block around mile 15. On a sunny day in September, Jim Flynn ran his...
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curemld
- Aug 10, 2021
- 4 min
Cure MLD, The Calliope Joy Foundation and NORD Launch a Research and Engagement Study of MLD
Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive...
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curemld
- Feb 27, 2020
- 1 min
Mothering Cal
Mothering Cal
What I learned from parenting a terminally ill child.
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curemld
- Feb 20, 2020
- 1 min
Gene Therapy Trial Wrenches Families as One Child’s Death Saves Another
Gene Therapy Trial Wrenches Families as One Child’s Death Saves Another
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curemld
- Feb 12, 2020
- 1 min
I can’t save my daughter from a terminal illness. But we can help save other children from the same
I can’t save my daughter from a terminal illness. But we can help save other children from the same fate.
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curemld
- Feb 5, 2020
- 1 min
How much would you pay for the miracle of gene therapy?
How much would you pay for the miracle of gene therapy?
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curemld
- Jan 29, 2020
- 1 min
Five times an Illinois health insurer rejected out-of-state treatment for a 4-year-old
Five times an Illinois health insurer rejected out-of-state treatment for a 4-year-old’s rare disease.
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curemld
- Jan 22, 2020
- 1 min
7 Patients Who Are Leading the Charge Against Their Rare Disease
7 Patients Who Are Leading the Charge Against Their Rare Disease
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curemld
- Jan 15, 2020
- 1 min
Medicaid covers sick or dying children. But it takes ‘going to battle’ to get it
Medicaid covers sick or dying children. But it takes ‘going to battle’ to get it
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curemld
- Jan 8, 2020
- 0 min
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curemld
- Jan 8, 2020
- 1 min
Read Cure MLD co-founder's oped for STAT
Read the link here.
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curemld
- Jan 8, 2020
- 1 min
Chicago Tribune chronicles MLD mom's fight for Medicaid approval. Read the story.
Read the story here.
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curemld
- Jan 8, 2020
- 4 min
Why did we start Cure MLD?
Why did you start Cure MLD? I get asked that question pretty frequently. The idea started at the 2019 Global Leukodystrophy Initiative. A...
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curemld
- Jan 8, 2020
- 3 min
A new decade brings new hope
Get ready for an incredible year and a new decade that will bring hope, challenges, and real progress. Cure MLD was only launched in...
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curemld
- Apr 12, 2019
- 1 min
Mothering Cal - What I learned from parenting a terminally ill child.
I have three beautiful children, the oldest two, who are 9 and 13 years old, excel at school and run track and play baseball and have...
231 views
curemld
- Apr 12, 2019
- 1 min
The Philadelphia Family Helping to Drive Research on MLD
Though Calliope Joy’s disease is too far progressed to be treatable, her parents have helped other children with metachromatic ...
95 views
curemld
- Apr 12, 2019
- 1 min
To really help a family in crisis, here are a few good rules to follow
By Andrea Paterson March 17 In late May 2013, our family went from zero to catastrophe in 24 hours: my husband was diagnosed with Stage 4...
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I would like to learn more about newborn screening and diagnostics.
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