Nonprofit

Program and Development Manager

Remote
Work must be performed in California, US
New
|
Published 28 days ago

Details at a Glance

Job Type
Part Time
Start Date
July 29, 2024
Application Deadline
July 26, 2024
Experience Level
Mid-level/Managerial
Compensation
USD $25 - $30 / hour

Description

MISSION: Our mission is to advance research, drug development, and possible treatments for GM1 Gangliosidosis, an ultra-rare rare lysosomal storage disease that primarily impacts babies and 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.  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 is in contact with the largest number of patients suffering from GM1 Gangliosidosis of any entity worldwide. Cure GM1 is currently collaborating with multiple parties on numerous projects to help advance possible GM1 treatments and to raise awareness.  Recent initiatives also include enzyme replacement therapy research, medical records collection, newborn screening, a caregiver preferences study, and an Externally-Led Patient-Focused Drug Development meeting with FDA.

 

PROGRAM AND DEVELOPMENT MANAGER POSITION

• Assist in general program and community outreach

• General support activities in a small rare disease nonprofit in outreach, program organization, and event planning

• Assist in development, community outreach, communication, and fundraising initiatives

• Maintenance of database, CRM and data entry, data management for Donor Perfect

• Lead internal processes to identify new donors to the organization through current and newly established networks

• Help increase funds raised and annual revenue

• Help drive attendance and sponsorships for meetings and events

• Help identify grants, manage and write grant applications

• Help with organization, coordination, planning, and execution of in-person events and/or online events and fundraising

• Leverage donor data to analyze progress to goals and evaluate fundraising strategies. 

• Develop fundraising collateral/materials to support donor engagement

• Partner with board to establish development planning, communication, and processes

 

Skills & Experience

• Authentic connection to rare disease and/or healthcare experience preferred

• Exceptional relationship-building and interpersonal skills

• DonorPerfect CRM experience, database management

• Excel, Word, Canva, GSuite, Powerpoint, Constant Contact

• 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 communicative collaborator

• Constant learner who is proactive, solutions-oriented; approaches all aspects of work with a growth mind-set.

• Bachelor's degree required; graduate degree appreciated.

MISSION: Our mission is to advance research, drug development, and possible treatments for GM1 Gangliosidosis, an ultra-rare rare lysosomal storage disease that primarily impacts babies and children.  GM1 destroys the brain and spinal…

Benefits

Accrued Sick Time

Paid Holidays

Flexible Schedule

Accrued Sick Time

Paid Holidays

Flexible Schedule

Level of Language Proficiency

Fluent English

Fluent English

Location

Remote
Work must be performed in California, US
Associated Location
535 Pierce St. #1104, Albany, CA 94706, United States

Apply to This Job

Instructions:

To Apply

ONLY California Residents should apply.

Please upload a resume and thoughtful cover letter. We will only contact candidates chosen for further consideration. No phone inquiries please.   Email info@curegm1.org

Resume must be uploaded in PDF format
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