Part-Time Executive Director

Job Details

Position: Part-Time Executive Director

Organization: Edmonton Dystonia Support Group

Type: Part-time contract / remote

Reports to: Edmonton Dystonia Support Group Board and Officers

Hours: Flexible hours, 10– 20 hours per month with a maximum of 240 hours per year

Compensation: CAD 60/hr

About Edmonton Dystonia Support Group (EDSG)

The mission of the EDSG is to advance research for more treatments and, ultimately, a cure; to promote awareness and education; and to support the needs and well-being of affected individuals and families. EDSG is a registered charity governed by a volunteer Board of Directors.

EDSG works in partnership with Dystonia Medical Research Foundation (DMRF) Canada to ensure funding of the best and most relevant dystonia medical research worldwide and in Canada.

Position Summary

The EDSG is seeking a part-time Executive Director to provide leadership, administration and personalized support to individuals and families affected by dystonia.

The Executive Director will work closely with the Board, volunteers, donors, healthcare professionals, community partners, and DMRF Canada to support people affected by dystonia, strengthen awareness, maintain good governance, and ensure the organization meets its charitable and reporting responsibilities.

Our work culture is collaborative, supportive, respectful, professional, and non-judgmental. The successful candidate will work alongside committed volunteers and charitable sector partners who are focused on making a meaningful difference for people affected by dystonia.

Key Responsibilities

Leadership, Governance, and Administration

• Support the Board in planning, decision-making, and carrying out the organization’s mission.
• Organize meetings, prepare agendas, record minutes, and follow up on action items.
• Maintain organizational records, policies, files, and governance documents. Prepare updates, reports, and recommendations for the Board.
• Manage general administration, including correspondence, filing, mailings, supplies, and records.

Financial and Compliance Management

• Support bookkeeping, banking, invoicing, deposits, vendor coordination, and financial documentation.
• Assist with budget tracking, financial reporting, and cost management.
• Ensure required records and reports are submitted accurately and on time, including tax, charitable, grant, and financial reporting.
• Support compliance with charity regulations, with Alberta Gaming, Liquor and Cannabis (AGLC) requirements, privacy requirements, internal controls, and Board-approved procedures.

Patient Support and Community Engagement

• Support individuals and families affected by dystonia in a respectful, compassionate, and inclusive manner.
• Respond to inquiries from patients, caregivers, volunteers, healthcare professionals, and community members.
• Provide personalized follow-up when appropriate, including by phone or email.
• Help connect people with support group meetings, educational resources, DMRF Canada materials, and community supports.
• Coordinate support group meetings, educational sessions, awareness activities, and community events. Recruit, train, and support volunteers and committee members as needed.
• Support volunteer-led fundraising and awareness events.
• Bring patience, empathy, and understanding when working with people with disabilities and chronic health conditions.

Communications, Awareness, and Partnerships

• Liaise with Movement Disorder Clinics and healthcare professionals to promote dystonia awareness and available supports.
• Prepare and distribute posters, notices, invitations, and outreach materials.
• Support print and digital communications as needed.
• Coordinate with DMRF Canada on resources, research updates, grants, and shared priorities.
• Build positive relationships with healthcare professionals, researchers, community partners, and support networks.

Fundraising and Donor Relations

• Support fundraising activities such as the casino fundraisers.
• Coordinate AGLC fundraising activities, records, volunteers, and reporting as needed.
• Maintain positive relationships with funders and community supporters.
• Support funding applications and research funding coordination.

Qualifications

• 3–5 years of relevant experience in nonprofit administration, community support, health charity work, disability services, or a related field.
• Experience working with a Board of Directors, volunteers, donors, and community partners.
• Experience supporting people with disabilities, chronic health conditions, patients, or caregivers.
• Strong written and verbal communication skills.
• Patient, empathetic, respectful, and comfortable responding to sensitive or health-related inquiries.
• Strong administrative, organizational, time management, and recordkeeping skills.
• Ability to work independently, manage multiple priorities, and adapt when priorities shift.
• Knowledge of charitable organizations, CRA compliance, privacy practices, and nonprofit reporting is an asset.
• Experience with bookkeeping and AGLC fundraising is an asset.
• Strong computer skills, including Microsoft Office, Adobe, Zoom, email, and online communication tools. Able to work occasional evenings and weekends.
• Valid driver’s license and willingness to travel locally within Alberta when needed.
• Must be a resident in Edmonton, Alberta.

EDSG is an equal opportunity employer. We encourage applications from all qualified individuals. Please note that a background check and the signing of a privacy & confidentiality agreement will be required for this position. We thank all applicants for their interest, but only those selected for an interview will be contacted.