KIF1A.ORG is led by a small but mighty community of KIF1A parents and volunteers. Here, you will find opportunities that are currently available to help us advance our mission at KIF1A.ORG. What skills would you like to share with the KIF1A community? If you don’t see anything here, feel free to reach out to us at and we’ll get in touch.

Our social media manager has a crucial role in raising awareness, engaging the community, and supporting fundraising efforts. Social media channels will include Facebook, Instagram, X, LinkedIn, and maybe TikTok. Here are the key responsibilities and strategies the social media manager will focus on:

  • Content Creation and Management
    • Educational Posts: Share accurate and informative content about KAND, including symptoms, treatments, and research updates.
    • Patient Stories: Highlight personal stories of KAND patients and families to humanize the disease and foster empathy and support.
    • Event Promotion: Promote upcoming events, such as fundraisers, awareness days, and community meetings. 
    • Visual Content: Use photos, infographics, and videos to make posts more engaging and shareable.
  • Community Engagement
    • Interactive Posts: Encourage followers to participate in discussions, polls, and Q&A sessions.
    • Respond to Inquiries: Promptly reply to comments and messages to build a supportive and responsive community.
  • Awareness Campaigns
    • Hashtag Campaigns: Create and promote specific hashtags to raise awareness and unify posts across platforms.
    • Collaborations: Partner with influencers, healthcare professionals, and other nonprofits to amplify the reach of campaigns. (ex: Effy Parks, Dr. Bain, etc.)
    • Awareness Days/Months: Leverage national or international awareness days and months to launch focused campaigns (ex: KIF1A Day, Epilepsy Awareness Month)
  • Fundraising Efforts: in coordination with the Fundraising Committee.
    • Donation Drives: Use social media to promote fundraising campaigns, including direct donation links, crowdfunding pages, and merchandise sales.
    • Event Coverage: Provide coverage of fundraising events through stories, photos, and real-time updates.
    • Gratitude Posts: Publicly thank donors and sponsors to show appreciation and encourage others to contribute.
  • Advocacy and Policy Support: in coordination with the Advocacy and Policy committee.
    • Legislative Updates: Share updates on relevant legislation and advocacy efforts.
    • Call to Action: Mobilize followers to support policy changes by signing petitions, contacting lawmakers, or participating in advocacy events.
  • Analytics and Strategy
    • Monitor Metrics: Track engagement, reach, and conversion metrics to assess the effectiveness of campaigns.
    • Adjust Strategies**: Use data insights to refine content strategies and improve future campaigns.
    • Audience Research**: Occasionally conduct research to understand the audience’s needs and preferences better.
  • Collaborative Efforts
    • Team Coordination: Work closely with leadership team members to align social media efforts with overall organizational goals.
    • Community Management: Engage and manage community members who can help amplify social media efforts, particularly during large campaigns or events.

By focusing on these areas, a social media manager can significantly enhance the visibility, engagement, and impact of KIF1A.ORG, ultimately contributing to greater awareness, support, and funding for our mission.

Our Fundraising Manager for KIF1A.ORG has a pivotal role in securing the financial resources necessary to support the organization’s mission. Here are the key responsibilities and strategies they should focus on:

1. Develop and Implement Fundraising Strategies

  • Create a Comprehensive Plan: Develop a detailed fundraising strategy that includes short-term and long-term goals, targets for different fundraising channels, and specific campaigns.
  • Diversify Funding Sources: Identify and implement diverse funding streams, including individual donations, corporate sponsorships, employer matching, events, and online crowdfunding.

2. Event Planning and Execution

  • Organize Fundraising Events: Plan, coordinate, and execute various fundraising events such as virtual fundraisers, merchandise sales, auctions, raffles, and possibly galas.
  • Logistics Support: Support community members planning and executing their own fundraisers for KIF1A.ORG and supply necessary material and resources available through KIF1A.ORG.

3. Campaign Management

  • Plan Campaigns: Develop and execute targeted fundraising campaigns, such as annual appeals, capital campaigns, and special initiatives.
  • Leverage Technology: Utilize online platforms, social media, and email marketing to reach a broader audience and drive campaign success.

4. Financial Management and Reporting

  • Budget Management: Develop and manage the fundraising budget, ensuring efficient allocation of resources.
  • Track and Report: Maintain accurate records of all fundraising activities and donations, and prepare regular reports for the board and leadership team.

5. Strategic Planning

  • Analyze Data: Use fundraising data and analytics to assess the effectiveness of different strategies and campaigns.
  • Continuous Improvement: Continuously evaluate and refine fundraising approaches based on feedback and performance metrics.

By focusing on these responsibilities, a Fundraising Manager can significantly contribute to the financial sustainability and growth of KIF1A.ORG, enabling us to better serve our community and advance our mission.

Our Donor Relations Manager plays a crucial role in supporting the fundraising and donor relations efforts of KIF1A.ORG. Here are the key responsibilities and tasks they typically handle:

1. Donor Database Management

  • Maintain Records: Update and maintain accurate donor information in the organization’s database, including contact details, donation history, and communication preferences.
  • Data Entry: Enter new donor information and donations promptly and accurately.
  • Data Integrity: Regularly review and clean the database to ensure data integrity and accuracy.

2. Donor Communication and Engagement

  • Acknowledgements: Prepare and send thank-you letters, emails, and receipts to donors promptly after donations are received.
  • Newsletters and Updates: Assist in creating and distributing newsletters, updates, and impact reports to keep donors informed and engaged.
  • Personalized Outreach: Help with personalized communication to major donors and long-term supporters.

3. Event Support

  • Event Invitations: Manage the distribution of event or fundraising invitations to donors and track donations or attendance.
  • Follow-Up: Conduct post-event and fundraising follow-up with participants, thanking them for their participation and providing information on how they can continue to support the cause.

4. Donor Research

  • Prospect Identification: Research potential new donors, including individuals, corporations, and foundations that may have an interest in supporting the organization.
  • Profile Development: Develop detailed profiles of prospective donors to assist in targeted outreach efforts.

5. Reporting and Analysis

  • Generate Reports: Create regular reports on donor activity, donation trends, and campaign performance to support strategic decision-making.
  • Analyze Data: Assist in analyzing donor data to identify patterns and opportunities for improving donor retention and acquisition.

6. Donor Retention Strategies

  • Recognition Programs: Help develop and implement donor recognition programs, such as thank-you gifts, donor webpages, and personal outreach.
  • Engagement Plans: Support the development of engagement plans to keep donors involved with the organization through regular communication and opportunities for involvement.

7. Collaboration and Coordination

  • Team Coordination: Work closely with other members of the fundraising, social media, and leadership teams to ensure cohesive and coordinated donor management efforts.
  • Volunteer Coordination: Collaborate with other volunteers involved in donor management to share tasks and ensure efficient operation.

8. Feedback Collection

  • Surveys and Feedback: Assist in creating and distributing donor satisfaction surveys and gathering feedback to improve donor experiences and engagement.

9. Training and Development

  • Continuous Learning: Participate in training sessions and workshops, paid for by KIF1A.ORG, to stay updated on best practices in donor management and nonprofit fundraising.

By fulfilling these responsibilities, our Donor Management team member will help to strengthen the relationship between KIF1A.ORG and it’s donors, ensuring sustainable support for our mission and programs.

Our Grant Specialist plays a vital role in securing funding for KIF1A.ORG by identifying, applying for, and managing grants from various sources; in close coordination with the grant committee. Here are the key responsibilities and tasks they typically handle:

1. Grant Research and Identification

  • Prospect Research: Identify potential grant opportunities from foundations, corporations, government agencies, and other funding sources.
  • Funding Database Management: Maintain and update a database of potential grant opportunities and deadlines.

2. Grant Proposal Development

  • Application Preparation: Write and prepare compelling grant proposals that align with KIF1A.ORG’s mission and the funder’s requirements.
  • Budget Creation: Develop detailed budgets for grant proposals, ensuring alignment with project needs and funder guidelines, in close coordination with the leadership team.
  • Supporting Documents: Gather and organize necessary supporting documents, such as financial statements, letters of support, and program descriptions.

3. Collaboration and Coordination

  • Internal Coordination: Work closely with program director, financial officers, Chief Science Officer, and other relevant staff to gather information and ensure proposals accurately reflect the organization’s needs and capabilities.
  • External Communication: Liaise with funders to clarify requirements, submit proposals, and provide additional information as needed.

4. Grant Management and Reporting

  • Grant Tracking: Maintain a calendar of application deadlines, reporting deadlines, and other key dates for all active grants.
  • Compliance Monitoring: Ensure that the organization complies with all grant requirements and conditions.
  • Progress Reports: Prepare and submit timely progress and financial reports to funders as required by grant agreements.

5. Funding Strategy Development

  • Strategic Planning: Assist in developing and implementing a strategic plan for grant funding to meet the organization’s financial goals.
  • Goal Setting: Help set realistic and achievable fundraising targets through grants.

6. Capacity Building

  • Training: Attend training on best practices in grant writing and management, paid for by KIF1A.ORG.
  • Resource Development: Create templates, checklists, and guides to streamline the grant application process.

7. Research and Evaluation

  • Needs Assessment: Conduct research and needs assessments to support the development of grant proposals.
  • Program Evaluation: Assist in designing and implementing evaluation plans to measure the impact of funded projects and programs.

8. Relationship Building

  • Funder Cultivation: Build and maintain relationships with current and prospective funders through regular communication, updates, and engagement.
  • Networking: Attend relevant conferences, workshops, and meetings to network with potential funders and other stakeholders.

9. Administrative Support

  • Documentation: Organize and maintain files and records related to grant applications, contracts, and correspondence.
  • Database Management: Enter and update information in the organization’s grant database.

10. Communication and Reporting

  • Impact Stories: Collect and share stories and data that demonstrate the impact of grant-funded programs to include in reports and future grant proposals.
  • Transparency: Ensure transparency and accountability in the use of grant funds, providing clear and accurate information to funders and stakeholders.

By fulfilling these responsibilities, our Grant Specialist helps to secure essential funding, ensuring the sustainability and growth of KIF1A.ORG’s programs and initiatives. This role is crucial for enabling the organization to continue its work in supporting those affected by KAND and advancing research and awareness efforts.