Run For Dan – in Full Color

Dan MullerTaking on the Run or Dye 5k in Hartford, CT on July 19, 2014 – a team of Danny Muller’s family & friends set out to raise awareness and funds for Choroideremia a cause that Danny fought for, and a cause that he believed in.  Dan passed away on January 29, 2014, far too early for this incredible young man.

Wanting to help honor Dan, the Muller family and friends joined in the July 19th Run or Dye and succeeded in having a great time, all while raising thousands of dollars for a DSCN0291Choroideremia in Dan’s name.  The event was such a success that there is already talk about next year’s race!

You can support the Run or Dye team by clicking here and making a donation to the team, or to any one of the individual team members.

 

2nd International Symposium draws leading researchers to Denver

Dr. Jean Bennett presentationMore than 25 leading retinal researchers from the UK, France, Finland, Germany, Canada, and the United States joined together June 17 & 18 in Denver, Colorado for the 2nd International Science Symposium for Choroideremia.  The symposium presented a unique opportunity for top researchers to present their work to each other in a highly technical format in order to drive forward the science and research that will lead to a cure for Choroideremia.  The Syposium featured the following presenters: Dr. Ian MacDonald, Dr. Stephen Tsang, Dr. Mariya Moosajee, Dr. Jessica Morgan, Dr. Eeva-Marja Sankila, Dr. Tania Bubela, Dr. Jean Bennett, Dr. David Gamm, Dr. Jacque Duncan, Dr. Vasiliki Kalatzis, Dr. Jeff Mumm, Dr. Tanya Tolmachova, Dr. Daniel Chung, Dr. Michael Young, Dr. Charles Gersbach, Dr. Robert MacLaren, Dr. Richard Harbottle, Dr. David Schaffer, Mr. Ben Shabermann, Dr. Amir Varkouhi, & Mr. Randy Wheelock.

CRF Research Symposium 4Presentations drew out in-depth discussions of processes and research opportunities that could better the understanding of Choroideremia and accelerate the road to a cure.  Presenters were not limited to only retinal specialists, a select group of leading researchers from different disciplines added a new dynamic to the discussions and helping to create a unique opportunity for ideas that have the potential to expand the existing approaches being used to develop treatments for blinding diseases.

36 Mile Swim to Cure CHM

14490442911_59e4531b23_k-2On June 21st, Mike Miller of Oahu, Hawaii took on the END WET 36 Mile swim in North Dakota – a grueling marathon swim down the Red River, through North Dakota and into Minnesota before exiting the water.  Mike is an accomplished and well respected Marathon Swimmer, and has successfully swam across the English Channel, the Catalina Channel (in California), and the Molokai Channel (in Hawaii).

Mike was the 9th finisher overall (6th Non-Wetsuit or “Traditional” swimmer), with a total time of 9 hours 34 minutes of continuous swimming.

This year Mike has dedicated his Marathon Swims to The Choroideremia Research Foundation – he is raising money and awareness throug14470851506_533ec57b58_k-2h these incredible endurace events because he knows how close we are to a cure for CHM.  Show Mike your support by Clicking Here and making a donation to his page “Mike’s Marathon Swims”.

Next up, Mike will swimming 17.5 miles AROUND MANHATTAN!  Here is a video clip of Mike immediately after he swam around Manhattan in 2012 . . . talk about dedication!