Who we are
Cure Mucolipidosis is a charity with one focus - to cure mucolipidosis!
We are a diverse group of people who have been impacted by mucolipidosis.
Cure Mucolipidosis is a not-for-profit organization established as a 501 c3 on 18th May 2021.
The organization is located in Illinois and has a mission to work alongside the Mucolipidosis Collaborative Research Network (MCRN) that was established in 2019 to help set a pipeline for the investigation of new modes of therapies for Mucolipidosis.
Our mission & vision
Cure Mucolipidosis is a global organization that is committed to the identification and treatment of Mucolipidosis through education, advocacy and research.
We form partnerships with Science, Medicine and industry and work towards finding a cure for people affected by Mucolipidosis globally
Our vision is to serve as a resource for stakeholders in the work, identification, treatment, and continual developments towards a cure for Mucolipidosis. We will help promote and support a global multi-stakeholder collaboration for Mucolipidosis.
We will also help to identify patient numbers globally in preparation for clinical trials and drug company development for a therapy or cure.
Our partners
Cure Mucolipidosis has a single Focus - to help find therapies for this group of rare Lysosomal Storage Diseases.
Cure Mucolipidosis supports the following disorders.
Mucolipidosis II alpha/beta
Mucolipidosis II/III alpha/beta
Mucolipidosis III alpha/beta
Mucolipidosis III Gamma
Sialidosis (Mucolipidosis I)
Meet the Team
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Jackie James
President
Illinois, USA
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Jenny Noble
Vice President - Research/Admin
New Zealand
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Kevin Gates
Treasurer
USA
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Truls Roll
Head of European Operations
Norway
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Susan Kester
Family Support
USA
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Nadia Jack
Social Media/Communications
New Zealand
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Dan Peach
Research Lead
New Zealand
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Charlotte Gilbert
Fundraising Lead
USA
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Sue Weng
Data Collection & Analysis
USA
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John Delaney
Marketing and Website
Australia
Cure ML Professional Advisory Board
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Alessandra d'Azzo
St. Jude Children's Research Hospital, USA
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Ming Li
University of Michigan, USA
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A/Prof Enrico Moro
University of Padova, Italy
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Stephan Tiede
University Medical Center Hamburg - Eppendorf
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Julia Taravella
Founder of the Rare Trait Hope Fund