Development, Communications, and Program Coordinator

MISSION

Our mission is to advance research, drug development, and possible treatments for GM1 Gangliosidosis, an ultra-rare lysosomal storage disease that primarily impacts babies and children.GM1 destroys the brain and spinal cord and is ultimately fatal. 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 the development of AAV gene therapy and small molecules. Prior to the existence of Cure GM1, there were no clinical trials even though the disease was first discovered in 1968. Advocacy, awareness, fundraising, and support of research and drug development have helped advance progress towards possible treatments.

OUR PROGRAM

To date, the primary source of funds has been individual donors via grassroots fundraising. Cure GM1 hosts an annual conference and several annual fundraisers and awareness events. 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 and has supported multiple newborn screening research projects. Recent initiatives also include medical records collection, a caregiver preferences study, and engagement with the FDA.

COMMUNICATIONS, OUTREACH, DEVELOPMENT POSITION

• Support essential activities to a small, rare disease nonprofit: outreach, development and fundraising, marketing, communications, and social media
• Aid in the Foundation’s awareness, recruitment, engagement, and education efforts
• Coordinate social media campaigns, email series, physical mailings, including content development for programs and events
• Help support and assist with development and outreach to donors
• Outreach to community members for participation marketing through quotes, videos, stories, graphics
• General community outreach to support events and programs

Skills & Experience

Candidates must demonstrate the following:

• Exceptional relationship-building and interpersonal skills
• Experience with Canva, Photoshop, GSuite, Slack
• Excellent verbal and written communication skills—inspiring, eloquent, and persuasive
• Ability to think strategically while executing tactically, in a lean and resource-constrained organization
• Independent, hands-on and motivated individual
• Highly disciplined, with superior organizational skills and unwavering attention to detail
• Self-motivated and highly communicative collaborator

Additional candidate qualifications include:

• Experiences in fundraising and crowdsourcing are also highly desirable
• Graphic design and artistic sensibility
• Web page editing and Wordpress experience
• Video-editing skills, iMovie, etc.
• Experience with Google Ads, Meta Ads, TikTok, YouTube, etc.
• Experience with CRM and email marketing

401k

Sick time

List of paid holidays

Excellent English