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AHCF Future Direction Jeff Wuchich, AHCF President 2012 Family Meeting 7/1/12 . A Dream…. One Dream We All Can Share. WE WILL CURE AHC BY 2025!. How Do We Get There? . Some factors beyond our control Research outcomes & potential complications Hitting a drug compound “home run”

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Presentation Transcript
one dream we all can share
One Dream We All Can Share
  • WE WILL CUREAHC BY 2025!
how do we get there
How Do We Get There?
  • Some factors beyond our control
    • Research outcomes & potential complications
    • Hitting a drug compound “home run”
    • Governmental approval process for therapies/cure
  • Let’s focus on what we CANcontrol to help NOW & in the future
    • Collaboration
    • Care & Connections
    • Conversations
    • Capital
collaboration
Collaboration
  • International Associations
    • Share Info on projects/proposals
    • Share best practices –standardize data collection
    • United front to drive research & reach unserved countries
  • Other Disease Foundations
    • Officially members of NORD as of June, 2012
    • Epilepsy, Dystonia foundations possible co-funding depending on scope
  • Researchers
    • Work with Medical Advisory Board (MAB) to create RFP for research direction
    • Facilitate discussions with research groups (i.e. Utah/Duke, Utah/Vanderbilt)
  • Families & Supporters
    • Foundation exists to help ALL AHC sufferers- it’s YOUR Foundation
    • Monthly Virtual “Town Hall” Meetings via GoToMeeting
    • Call or Email me any time with comments or suggestions
    • Communicate volunteer opportunities
care connections
Care & Connections
  • Family Mentors
    • Families of older children willing to help guide newly diagnosed families
    • Willing to participate in Virtual “Town Hall” to provide experience
    • Guest blogging on Website to provide helpful hints
  • Resources for Adult AHC Sufferers
    • Forum similar to Yahoo! that parents use so AHC adults can share experiences
    • Equip AHC adults to be as independent as possible
  • Financial Resources
    • Like Italian Assoc.- help families afford therapy items (either directly or through resource list)
    • List of agencies (like Medical Home) that can help obtain assistance
  • Physician/Care Professional Database
    • List of physicians who are familiar with AHC (treating a sufferer)
    • List of other professionals (Therapists, Caregivers)
conversations
Conversations
  • Research Results Announcement
    • When time comes leverage PR Plan
    • Work with Pepsi & Major Media to showcase “little Engine that Could” Story of Transformation
  • Conferences
    • Through NORD potential scholarship to 2nd Annual Rare Disease Conference
    • Also potential for literature share at NORD events (minimal cost – materials/postage)
  • Local Outreach
    • Talking points from PR “pitch” for local use with your own story
    • Materials (revamp 1 in a Million?) to share in your community
  • Just have Conversations- you never know who you might reach
    • Iceland Association (Siggi) – Vaccines, ÓlafurDarriÓlafsson
    • Pepsi Refresh example
capital
Capital
  • Fundraising Toolkit
    • Step by Step instructions for many types of Fundraisers, with estimates of time & cost
    • Limited expense reimbursement potential from Foundation
    • Successful fundraisers mentoring new events & growing theirs year over year
  • Grants
    • We already have a shortlist of major grants to pursue (but need grant expert to offer services pro-bono)
    • Local grant resources that may support national initiatives like us to support local child (see Fundraising Stars for examples)
  • Major Donors
    • Need to learn best practices on approaching major donors
    • Train as many families & supporters as possible To ask (Board member accompany if possible)
  • Annual Campaign
    • Build existing/potential donor database through local fundraisers
    • Share stories from blogs , news stories, patient interviews, etc. to grow potential donors into
    • donors and existing donors into larger donors
the bottom line
The Bottom Line…
  • “Alone we are rare. Together we are STRONG!”- NORD Slogan
  • "Never underestimate the power of a small, dedicated group of people to change the world; indeed, that is the only thing that ever has." - Margaret Mead
  • ”You must give birth to your images. Fear not the strangeness you feel. The future must enter you... Long before it happens.” Rainer Maria Rilke
  • Ask what YOUR foundation can do for you, AND ask what YOU CAN DO for YOUR foundation
next family meeting
Next Family Meeting
  • When? 2014
  • Where? TBD by Feb., 2013
  • Until then…

Bye-Bye!

See you Later!