Advisory Committees & Teams

Community Activation

KIF1A.ORG is powered by families united by one mission: improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure.

Our mission is bold, but not impossible if we tackle it together. We. Need. YOU. Every family member impacted by KAND has value to bring to our organization by serving as an advocate or volunteer for KIF1A.ORG. Even “small” actions, like submitting a fundraising idea or sharing KIF1A.ORG on social media, can make a big impact.

Are you eager to do more? If you have the availability and interest in donating sustained time and energy to KIF1A.ORG, consider an Advisory Committee or Team volunteer opportunity. Participating members will collaborate with KIF1A.ORG and each other to help achieve our shared mission.

Advisory Committees

Advisory Committees help KIF1A.ORG stay attuned and responsive to the needs and aspirations of our community. Their objective is to gather feedback, brainstorm ideas and make recommendations to KIF1A.ORG for organizational improvement.

  • 7–9 members with diverse backgrounds (location, age, severity of patients, etc. will be considered when selecting members)
  • Led by a chairperson voted on by the committee members
  • Quarterly teleconference meetings followed by written feedback/recommendations to share with the KIF1A.ORG Leadership Team and Board of Directors
  • Committee members will serve one-year terms starting February 2020
  • Advisory Committees exist to share valuable insights and recommendations, but not to implement ideas or make decisions for the organization
  • Advisory Committees may recommend Teams or projects/tasks for Teams (see below) to be considered by the KIF1A.ORG Leadership Team and/or Board of Directors
  • Advisory Committee members may also serve on one or more Team, but should serve on only one committee at a time

How might KIF1A.ORG & our efforts to improve care & therapeutic treatment stay centered on the experiences, needs & priorities of patients & families affected by KAND?

How might KIF1A.ORG improve support & provide resources for families affected by KAND?

How might KIF1A.ORG improve efforts to fund our goals & translate awareness into action to advance our mission?

Teams

Teams are organized by KIF1A.ORG to implement ongoing or special activities that advance our mission.

  • Variable number of members, depending on activity demands and volunteer interest
  • Led by a Team Leader designated by KIF1A.ORG Leadership Team
  • Teams implement ongoing or special activities that may involve daily, weekly or monthly involvement
  • The KIF1A.ORG President (or another member of the Leadership Team) will collaborate with Teams to determine which activities to implement to ensure alignment with the needs, resources, strategy and mission of KIF1A.ORG
  • Team Leader will be responsible for keeping activities on task and monthly check-ins (via email or teleconference) with the KIF1A.ORG President to discuss progress, challenges, ideas and needs
  • Team Leaders and members do not have term limits, but may be reassigned by the KIF1A.ORG Leadership Team if needed for the best interest of the organization and/or to provide opportunities for new members
  • Team members may serve on one or more Team and/or an Advisory Committee
  • Subteams may be created to organize focused groups of Team members around special projects
  • Our work is interconnected, and some Teams/activities may overlap—collaboration is key

Helps KIF1A.ORG family members engage with and support one another in our community.

Possible activities:
• Develop Community Guidelines that communicate our organization’s values and approach to member engagement
• Serve as a “Welcome Ambassador” for newly diagnosed families
• Host discussion threads to spark conversation around topics important to the KIF1A community (e.g. caregiving challenges, physical therapy, sibling support, etc.)

Helps KIF1A.ORG identify and create supportive resources for patients, parents, grandparents, siblings and others impacted by KAND.

Possible activities:
• Coordinate Support Packages for newly diagnosed families and Care Packages for sick/hospitalized KAND patients
• Gather messages and keepsake for grieving families who have lost a loved one affected by KAND
• Create and maintain a directory of doctors and specialists who treat KAND patients by collecting information offered by KAND families

Helps KIF1A.ORG and community members identify and pursue opportunities to fund the mission of KIF1A.ORG.

Possible activities:
• Provide guidance to members conducting family-led fundraising events, such as silent auctions, marathons, tournaments, etc.
• Research prospective foundations and corporations with grant/sponsorship opportunities
• Write grant applications and other donation request materials

Helps the KIF1A.ORG community stay informed and engaged with the latest scientific research relevant to KAND or rare disease.

Possible activities:
• Curate relevant articles, papers and news for a weekly Research Alert
• Produce “Research Simplified” summaries and video interviews with KAND researchers
• Help keep the Research section at KIF1A.ORG up to date

Helps KIF1A.ORG design and implement marketing/communication strategies and resources.

Possible activities:
• Create a Brand Style Guide and digital assets
• Create communication resources such as a monthly newsletter, KIF1A.ORG brochures, blog posts, social media content, etc.
• Launch and manage Google Ad Grants to promote KIF1A.ORG and extend our outreach to un/misdiagnosed patients

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