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AЯRE needs assistance from family, friends, caregivers, and neighbors to make our vision possible.  We are a volunteer based organization and your support is critical.

Any assistance that you can provide in these areas below would be greatly appreciated.

To learn more and discuss potential volunteer options, please contact

Marketing committee

  • Create and manage content, videos, functionality (e.g. SEO), & reporting for AЯRE website
  • Prepare monthly newsletters and contribute content
  • Update content for Facebook, Pinterest, Twitter and other social media accounts
  • Manage content calendar and align communications
  • Develop a donor/CRM database and create email marketing automation

Fundraising committee

  • Identify and support various ways to give to AЯRE
  • Develop event based templates for fundraising
  • Ensure fundraising services meet financial and regulatory requirements
  • Assist with shop experience and fundraising items
  • Audit fundraisers to ensure accurate representation of AЯRE

Research committee

  • Collaborate with medical & scientific advisors on review of research RFPs
  • Poll parents for inputs on types of research selected
  • Ensure research applicants meet regulatory requirements 
  • Determine grantees selected and manage accountability to track/report their progress


  • Track and report total donation receipts by type
  • Gather documentation for IRS reporting and regulatory/compliance requirements 
  • Manage oversight and review of bank reconciliations and bank statements
  • Ensure proper internal control procedures are in place for accounting, money handling, etc.

Conference committee

  • Manage agenda, logistics, and technical support for ASXL conferences
  • Assist with travel arrangements of medical/scientific personnel
  • Partner with other consortiums such as Citizen for Epilepsy and councils with similar needs
  • Explore options to provide continuing medical education credits for physician attendance

International ambassadors

  • Relationship lead who can converse with newly diagnosed families in their native language
  • Provide information/resources and obtain contact information for ASXL registry/other AЯRE communications

Vice chair

  • Assume the Chair’s duties when the Chair is unavailable
  • Works with the Chair to ensure operations and other activities proceed smoothly
  • Take on special duties on an as needed basis


  • Assist with the facilitation of quarterly meetings and keeping the minutes
  • Manage correspondence and work with the other Directors