MISSION

Our mission is to advance research, drug development, and possible treatments for GM1 Gangliosidosis, an ultra-rare lysosomal storage disease that primarily impacts children. GM1 destroys the brain and spinal cord and is ultimately fatal in children. Our work is guided by the belief that all those suffering from this horrendous disease deserve treatment. Treatments and discoveries associated with rare diseases can contribute to advancements with broad ramifications to the entire field of medicine.

Organization Overview

The Cure GM1 Foundation was founded in April of 2015. To date, the primary focus of research has been AAV gene therapy. The first AAV research program for which funding was provided has now been licensed to a biotech company and the first in-human clinical trial was initiated in 2019. Cure GM1 aims to advance several possible treatments and approaches. In addition, we help support and communicate with the GM1 patient community on a daily basis.

OUR PROGRAM

To date, the primary source of funds has been individual donors via grassroots fundraising. Cure GM1 has hosted GM1 conferences and drives awareness and community. Cure GM1 is in contact with the largest number of patients suffering from GM1 Gangliosidosis of any entity worldwide. Cure GM1 is currently collaborating with multiple entities on research programs. Cure GM1 is also supportive of multiple biotech companies’ efforts. Additional initiatives also include newborn screening assay development, a caregiver preferences study, the creation of a biorepository, and the creation of a patient-led natural history study.

MONTHLY NEWSLETTER COMMUNICATIONS CONTRACTOR

Outline a newsletter for approval
Write and create graphics for the newsletter
Create WordPress and Constant Contact versions of newsletter

Skills& Experience

Authentic connection to rare disease and/or healthcare experience preferred
Word, Canva, Photoshop, G-suite
CRM and Email software experience, Constant Contact, MailChimp, etc.
Wordpress and website editing abilities
Tech savvy
Excellent verbal and written communication skills—inspiring, eloquent, and persuasive.
Ability to think strategically while executing tactically, in a lean and resource-constrained organization.
Self-motivated and communicative collaborator
Independent, hands-on and motivated individual who meets deadlines
Highly disciplined, with superior organizational skills and unwavering attention to detail.
Bachelor's degree required

Salary: Propose your wage if you like for consideration

Cure GM1 Foundation

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Monthly Newsletter Communications Contractor