| | Kim Edwards Receives First Annual CRF Randy Wheelock Research Grant of $50,000 The first recipient of this new annual award is young investigator Kim Edwards at the University of Wisconsin, for "Identifying the Function of REP-1 Protein in Retina (RPE/Photoreceptors) and Non-Retina Tissues". "This award will enable me to develop a greater understanding of the underlying pathobiological mechanisms of choroideremia and push toward our collective goal of finding effective treatments," said Ms. Edwards. The Choroideremia Research Foundation created the this award in memory of Randy Wheelock who passed away last year. He served as CRF's Chief Advisor to Research and Development, and we are pleased to continue his dream of finding a cure for choroideremia by accelerating scientific advancements in his memory. |
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| Welcoming Returning Board Member Bob Hillier! Bob was a founding member of the CRF and has been the President of CRF Canada (CRFC) since its inception in 2004. The CRFC has raised over $400,000 for CHM research and leveraged those funds to generate $1.5 million in CHM research including the University of Alberta gene therapy trial. He and his wife, Martha, have two adult daughters and live in Brantford, Ontario. |
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| Welcoming Returning Board Member Bob Hillier! Bob was a founding member of the CRF and has been the President of CRF Canada (CRFC) since its inception in 2004. The CRFC has raised over $400,000 for CHM research and leveraged those funds to generate $1.5 million in CHM research including the University of Alberta gene therapy trial. He and his wife, Martha, have two adult daughters and live in Brantford, Ontario. |
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| Events and Impact CHM Family Live Chat - CHM Mothers: Thursday, June 25 from 6-7:30 PM ET / 3 - 4:30 PM PT - Please join us for a discussion about the journey mothers have as a daughter, a carrier, and parent of children with choroideremia. Our time together will bring hope, ideas, support, laughter, and friendship. *Participation is limited to 15 registrants, so sign-up today. CHM Family Live Chat - Career Planning for CHMers: Thursday, July 9 from 6-7:30 PM ET / 3-4:30 PM PT - CRF volunteers and staff will share career tips for CHMers with attendees. *Participation is limited to 20 registrants, so sign-up today. 2020 TCS New York City Marathon: Support our Team CHM squad that is running to raise awareness and funding for choroideremia research! Million Dollar Bike Ride: CRF just wrapped up the Million Dollar Bike Ride with over $42,000 raised! We met the $30,000 gift match from Penn Orphan Disease Center for a total over $72,000 raised. Thank you so much for being a part of this tremendous effort. We could not have done it without YOU. |
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| Navigating in a World of Social Distancing When Blind CRF's Director of Advocacy, H. Eric Hartman, spoke with Global Genes about living with CHM while socially distancing. The article focuses on the willingness of others to assist those with vision impairment while in fear of the recent outbreak. Read the full article here. |
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| Navigating in a World of Social Distancing When Blind CRF's Director of Advocacy, H. Eric Hartman, spoke with Global Genes about living with CHM while socially distancing. The article focuses on the willingness of others to assist those with vision impairment while in fear of the recent outbreak. Read the full article here. |
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| European CHM Patient Conference 2020 PRO RETINA, France Choroideremia, and Retina International are hosting a conference for choroideremia patients and people interested in the disease. The objective is to give an update on the research into new options regarding diagnosis and treatment. Initial studies of gene therapy have been conducted worldwide and have already been applied in Germany. The conference will report on vision aids and counseling options. This will prove an excellent opportunity to exchange experiences in dealing with the disease. Speakers and moderators will be happily standing by to answer questions. All presentations will be translated by interpreters in English, French, and German. Attendance costs are 100 EUR for PRO RETINA members. Non-members and international guests can attend for 75 EUR. Accommodations can be booked separately in the H+ Hotel Wiesbaden Niedernhausen. Accommodations for four guests can be books at the MICADOR Appartmenthaus, Niederhausen. When: Friday, October 2, 2020 to Sunday, October,4, 2020
Where: Wilhelm Kempf House 65207 Wiesbaden, Germany. The venue is directly within reach of the Frankfurt Central Station. |
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| | AmazonSmile Now Available in App Did you know that Amazon supports nonprofit organizations through AmazonSmile by donating a percentage of sales? Now you can support CRF while shopping on your phone. Simply sign-up for the Amazon app and activate AmazonSmile by following the instructions in the link. |
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| AmazonSmile Now Available in App Did you know that Amazon supports nonprofit organizations through AmazonSmile by donating a percentage of sales? Now you can support CRF while shopping on your phone. Simply sign-up for the Amazon App, and activate AmazonSmile by following the instructions in the link. |
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| | | | | Choroideremia Research Foundation
23 E. Brundreth St.
Springfield, Massachusetts 01109
800-210-0233 | info@curechm.org | |
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