CRF West Agenda
September 27th, 2016 by Cory MacDonald
PRESENTED BY THE CHOROIDEREMIA RESEARCH FOUNDATION
OCTOBER 22, 2016
HAMPTON INN, TREMONTON UT
MEETING AGENDA AND SCHEDULE
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8:00 – 9:00am – Meeting registration, social hour. Coffee, refreshments provided.
9:00 – 9:30 – Introduction – Bob Pettipaw.
Topics covered – Meeting agenda. Personal history. Genetic link of CHM. Brief history of current and pending natural history studies and clinical trials. Local and national resources for CHMers. Benefits of joining the CRF.
9:30-9:45 – Break and set up for speakers.
9:45 – 11:15 – CRF Operations manager Cory MacDonald.
Topics covered – CRF History/Overview, Ways to find Support/Information, Fundraising.
11:15 – 11:45 – Questions and open forum.
11:45 – 1:00pm – Break for lunch and social.
1:00 – 2:30pm – Mr. Randy Wheelock. Chief Advisor for Research and Therapy Development
Topics covered – The science of CHM, History and genetic link. Current and future natural history studies and clinical trials. Early results. How to be involved in the process.
2:30 – 2:45 – Break
2:45 – 3:00pm – Bob and Paige Pettipaw.
Topics covered – Geneology and family history resources. Family dynamics and the elephant in the room.
3:00 – open ended – Questions and answers to all participants.
Open ended – Post meeting social time.