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What is the Choroideremia Research Foundation?

The Choroideremia Research Foundation (CRF) is the largest organization in the world focused on the search for a cure for Choroideremia (CHM).  The Foundation raises funds to support research programs that either focus specifically on Choroideremia or that have application to multiple retinal diseases, of which CHM is included.  The CRF was founded in 2000 by a small group of individuals affected with CHM and their families.

Choroideremia Research Foundation Timeline
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CRF Timeline

What is Choroideremia?

Choroideremia (CHM) is a rare inherited disorder that causes progressive vision loss, ultimately leading to complete blindness.  The first symptom is generally night-blindness, followed by vision loss in the mid-periphery. These “blind spots” appear in an irregular ring, only leaving patches of peripheral vision, while central vision is still maintained. Over time the peripheral vision loss extends in both directions leading to “tunnel vision” and eventually complete loss of sight.  The genetic defect causing the disease occurs on the X chromosome.  As a result, men are predominantly affected by CHM; women, who in rare cases can show full-blown signs of CHM, typically are carriers of the disease.  CHM is estimated to affect 1 in 50,000 individuals, making it a rare disease.

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What is the prognosis for people with Choroideremia?

People with Choroideremia (CHM) begin to demonstrate signs of vision impairment in their childhood, most notably with poor night vision.  Peripheral vision loss begins as “blind spots” which grow in size and eventually coalesce into an irregular ring, leaving affected individuals with tunnel vision.  While progression of vision loss varies to some degree, most individuals with CHM are legally blind in their 30’s.  Central vision loss eventually deteriorates as well, eventually leading to complete blindness.  No treatment or cure has been developed to this date to slow down or halt vision loss from CHM.

Where does the Choroideremia Research Foundation get its funding?

The Choroideremia Research Foundation (CRF) is supported through donations from individuals and corporations.  The CRF’s primary source of funding is a grassroots network of members who organize and support fundraisers across the United States and internationally.  Donations to the CRF have directly supported the pre-clinical development of an experimental gene therapy treatment currently in clinical trials in the United Kingdom, in addition to others soon to begin in the United States and Canada.

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Choroideremia in the News

 

Cory MacDonald – ABC40 Springfield – Living with CHM & Dining in the Dark Fundraiser

Jeff Benelli & Danny Boren – NBC10 Philadelphia – Men Going Blind Take on Philly Marathon

Danny Boren – ABC15 Phoenix – Blind Man Raises Awareness About Rare Eye Disease by Competing in Ironman Arizona

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Jodi McLaughlin – NBC2 Alaska Women Raise Money for Rare Disease

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BBC announces results of gene therapy trial – Read Article

Driving Blind CNN – Read Article

Jeff Benelli recent – Read Article

USA Gene Therapy – Read Article

EJ Scott – Men’s Fitness Magazine – Marathon Running Activist EJ Scott Races to Raise Profile of Choroideremia – Read Article

Fight For Sight story on Emma Salisbury – Read Article

Nick Tuftnell – Daily Mail UK  interview – Read Article

CRF Youtube Channel – View Video Channel

Seeing, Differently documentary – Read Article

Devoe Lehigh Valley Iron Pigs – Read Article

Wizards of Winter – Read Article

Eric Hartman – Read Article

Eye Wire Today – Read Article

press releases

Groundbreaking Gene Therapy Trials Begin in Philadelphia – Jan. 20, 2015


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Media Contact:

Cory MacDonald

corymacdonald@curechm.org

413-781-2274

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