CRF West Agenda


OCTOBER 22, 2016

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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.

IRONMAN Racers Raise Over $65,000 for CHM

On September 11th a group of inspiring athletes participated in IRONMAN Wisconsin to push themselves to their physical limits while impacting the lives of those facing choroideremia. While swimming, biking, and running 140.6 miles is challenging enough, these athletes took on an ever greater challenge: saving sight.

Nine athletes toed the starting line for Team CHM and raised over $65,000 to fund treatments and a cure for CHM.

Thank you to our exceptional IRONMAN athletes:Team CHM at IRONMAN Wisconsin
Eric DeWitt
Laurel Groff
Jeff Lawton
Robert Newell
Jake Ohman
Eric Roberts
Stephanie Sims
Jody Smith
Zack Whitson

Stephanie Sims at IRONMAN WisconsinTeam member Stephanie Sims earned an entry to IRONMAN’s World Championship in October of 2017 as Team CHM’s top fundraiser, raising over $12,000 to impact her family and the lives of all effected by choroideremia.

Highlights from the weekend outside of cheering our exceptional athletes on to the finish include a presentation from CRF-funded researcher Dr. David Gamm at the Team CHM dinner and a presentation by Dr. Chris Moen of Team CHM’s video to all IRONMAN athletes at the event’s Welcome Banquet.

Team CHM at IRONMAN WisconsinPhotos from the weekend are available on Team CHM’s Facebook page, include scenes from Team CHM’s journey to save sight on the run course at IRONMAN Wisconsin and the morning swim and transition to bike course.

A big thank you to each of our athletes for providing hope and raising critical funds to find a cure. Your many miles of training and racing over the past year make a difference. Special thanks to Brandon Becker, Connor Miller, Dan Peterson, and Brett Sims for volunteering with Team CHM throughout the weekend.