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S: Pictorial History of the CRF

BC: In August of 2000, the first Annual Meeting of the Choroideremia Research Foundation was held in Orlando, Florida. Revisions to the Bylaws were voted on, Officers were elected and installed, and the first serious talks on how to raise funds and promote the CRF were held. A year later, the CRF applied for and received its 501(c)3 designation from the United States government. When the CRF first formed, one of the largest hurdles for researchers was the lack of a Choroideremia animal model available for doctors to use in their research. CHMers lack a protein called RAB Escort Protein-1 or REP-1. The lack of this protein is what causes blindness in a CHM patient, but when you remove this same protein from any other animal besides a human, the animal will die. With the aid of funding by the Choroideremia Research Foundation, this impasse was overcome by Dr. Miguel Seabra of Imperial College in London with the creation of a viable CHM model. Dr. Seabra has teamed with DR. MacLaren in the UK to develop a genetic therapy for CHM. These trials began in November of 2011. Dr. Jean Bennett of the University of Pennsylvania has taken this research and is in development of a genetic therapy to treat CHM. Dr. Bennett has completed most of the pre-clinical trial work and expects to be able to move ahead with a Phase I/II FDA study for human patients in late 2012. With continued funding from the CRF, there is real hope that clinical human trials to save our sight are not far away! Ten years ago, a person diagnosed with Choroideremia was given little information about CHM, told there was little research going on, and no hope for a viable treatment or cure. Due to funding provided by the CRF, this outlook has changed. Now, it is no longer a question of “if” a treatment or cure can be found, it is now a question of “when.” Due to the work of the CRF and others, there is now real hope for CHMers around the world. With your help, this hope will soon become the reality of a treatment or cure!

FC: The Pictorial History of the CRF

1: In the mid-nineties, a computer student noted his personal struggle with Choroideremia on his web page. Over time, as more and more people joined the computerized world, they formed an email list-serve in 1998. In 1999, discussions began among the group on the best direction they should take to help push CHM research forward. The first mention of forming their own separate entity dedicated to raising funds for CHM research, raising awareness of CHM in the scientific community and reaching out to those in the CHM community for mutual support came from Bobby Jarrett of Chicopee, Massachusetts. In an email to the group, he mentioned that many voices are better than one, and by joining together as an official organization, we could make our voices heard. Towards the end of August in 1999, John Oster emailed the group a draft of what would eventually become the Mission Statement of the Choroideremia Research Foundation. A volunteer steering committee was formed soon after, and work began in earnest on the formation of this organization. Seven initial Board members were chosen, Bylaws and a Mission Statement were written and approved, and in March of 2000, the Choroideremia Research Foundation, Inc. became an official entity. The dream of a few people of an organization dedicated to the elimination of Choroideremia had become a reality! deal with this eye disease on a daily basis. Before this group found each other via the internet, most did not know another person with CHM other than another family member, such as a brother or uncle. Finally, each found someone who understood what it’s like to have CHM. As one member says when greeting new members of the group, “Welcome to the home you always knew you needed but could neither find nor define”. As this group grew, it became apparent they needed to find a treatment or cure for Choroideremia. It is estimated there is one person with CHM in 50,000; or in the United States, this would be about 6,000 people out of 300 million. As CHM is so rare, there is no celebrity spokesperson, no publicity, and no major charity helping to fund CHM research. In 1999, discussions began among the group on the best direction they should take to help push CHM research forward. Options such as lobbying Congress, working to raise funds and direct them through the Foundation Fighting Blindness, forming a small affiliate group of the FFB, etc., were all discussed. The first mention of forming their own separate entity dedicated to raising funds for CHM research, raising awareness of CHM in the scientific community and reaching out to those in the CHM community for mutual support came from Bobby Jarrett of Chicopee, Massachusetts. In an email to the group, he mentioned that many voices are better than one, and by joining together as an official organization, we could make our voices heard. Towards the end of August in 1999, John Oster emailed the group a draft of what would eventually become the Mission Statement of the Choroideremia Research Foundation. A volunteer steering committee was formed soon after, and work began in earnest on the formation of this organization. Seven initial Board members were chosen, Bylaws and a Mission Statement were written and approved, and in March of 2000, the Choroideremia Research Foundation, Inc. became an official entity. The dream of a few people of an organization dedicated to the elimination of Choroideremia had become a reality! This euphoria was dampened by the loss of founding member and initial Board member Bobby Jarrett, who passed away in late May of 2000. One of the driving forces behind the forming of the CRF, Bobby knew the potential of this group, but unfortunately never saw the potential become the reality it is today. This site is dedicated to his memory. In August of 2000, the first Annual Meeting of the Choroideremia Research Foundation was held in Orlando, Florida. Revisions to the Bylaws were voted on, Officers were elected and installed, and the first serious talks on how to raise funds and promote the CRF were held. A year later, the CRF applied for and received its 501(c)3 designation from the United States government. Since then, more and more people have found the CRF through internet searches, through word of mouth, and now that doctors are becoming more aware of the CRF, they refer their patients to the CRF website. The CRF has become recognized as a major source of information on Choroideremia. The National Organization for Rare Disorders, Inc. now recognizes the CRF as a source of information about CHM in general, as well as information on the latest research being conducted around the world. The Foundation is in contact with specialists around the world and shares any breaking news on research with our membership. When the CRF first formed, one of the largest hurdles for researchers was the lack of a Choroideremia animal model available for doctors to use in their research. CHMers lack a protein called RAB Escort Protein-1 or REP-1. The lack of this protein is what causes blindness in a CHM patient, but when you remove this same protein from any other animal besides a human, the animal will die. With the aid of funding by the Choroideremia Research Foundation, this impasse was overcome by Dr. Miguel Seabra of Imperial College in London with the creation of a viable CHM mouse model. This same doctor is now performing research with the CHM mouse on the development of a genetic therapy to cure Choroideremia! Dr. Jean Bennett of the University of Pennsylvania has taken this research and is in development of a genetic therapy to treat CHM. With funding from the CRF, there is real hope that clinical human trials to save our sight are not far away! Ten years ago, a person diagnosed with Choroideremia was given little information about CHM, told there was little research going on, and no hope for a viable treatment or cure. Due to funding provided by the CRF, this outlook has changed. Now, it is no longer a question of “if” a treatment or cure can be found, it is now a question of “when.” Due to the work of the CRF, there is now real hope for CHMers around the world. With your help, this hope will soon become the reality of a treatment or cure! | 1st CRF Conference in Albany, NY 2002

2: Karen & Cory MacDonald with Robyn Orenstein, Vegas Bob Hane, Jackie, Vicki & Grandson | Derry Walsh, Cork, Ireland Jack Cunningham, Chicago | David & Sonda Stateman, Josh Hoffman | This was the 1st CRF event held! Golf event in Estero FL. Hosted by Pat Ingeno

3: 2nd annual Blind Beer Tasting 2003 | Tammy Olszewski & Karen MacDonald | Matt Oster & Heather MacDonald | Matt Oster & Donna Conway | David Weaver | Marion & Ed Scott, Cory MacDonald | Peter Jarrett | Tim & Janet Rowley | Frank MacDonald & Friends

4: John & Barbra Fenner | Janet & Tim Rowley | David & Sondra Stateman | 2004 Conference New Orleans | Hartman Family

5: Tammy Olszewski & Tracy Galvin | Angus MacKinnon | John & Matt Oster | Donna Conway & Matt Oster | Nicola Burdett & Sion Simon | Tom Pettit, Sally & Roland Pettit

6: Rick & Pam Holley | Kim & Mike Monahan | Martha & Bob Hillier | Marion & Ed Scott | Dr. Tony & Daniele Vetere | Roland Pettit, John & Charlie Oster

7: Laura & Lin Ogg | Wayne Jolin | Tracy Galvin & Artman | Dave & Amita Furgoch | Erik Weinstock | Janis & Fran Ford | Rebecca & Jeff Cagle

8: Cory & Karen MacDonald | Tim & Janet Rowley | New York City 2004 | Marion & Ed Scott | Josh Hoffman & Sonda Stateman | Benoit & Ann-Laure Gres

9: Angus & Hayden | Craig & Michelle Schaller | Fraser Alexander | Derry Walsh | Lorie & Brian Mayer

10: Ford Family Wine Tasting 2004 | Joe & Joanne Salois Cory MacDonald | Cory & Fran Ford | Mitch Ford & Cory | Janis, Friend, Tammy, Karen & Cory | Tammy, Diane & Joe Gullo Marion Scott | George & Janice Bianculli Janis Ford & her Brother

11: Ford Family Wine Tasting 2005 | Janis Ford with Friends | Mitch Ford | Friend, Fran Ford, Cory & Karen

12: Peter, Tracy, Tom, Tammy & John Fenner | Charlie & John Oster | Kim, Tom, Stuart, Larry | Tracy & Peter, Harry | 2006 Conference Chicago, IL | Tyrone, Janet, Janis & Tim | Bini & Erik Weinstock, Harry Evens

13: Dr. Ian MacDonald | Lin Ogg, Vets, Sion, Erik | Rick & Pam Holley | Lin. Vets, Jeani & Erik | Lin, Vets, Artman, Sion & Erik | John Oster, Jim & Marsha Banks, Jeani Cunningham

14: Bob & Suzanne Spears | Dr.Seabra | Jerry & Rhonda Timko + Family | Bobby Bee & Friends | Felice Cleveland, Tammy O, Seth, Karen MacDonald, Mari Cleveland & Cory | Angus MacKinnon | Eric Hartman Sion Simon

15: Matt Oster & Donna Conway | Matt & John Oster | Steve Rattary & King Dibbles | Emma Salisbury & Family The Tommy Salisbury Choroideremia Committee over the past few years have raised over 200,000 for research.

16: Larry Hall & Dr. MacDonald | Dr. Ian MacDonald | Jeff Benelli & son's | Julie & Jeff Benelli | Outer Banks 11-11-07 | 8-27-07

17: Albert & Liam Ging | Kristen, Allie & Liam Ging | Kevin, EJ Scott & Cory MacDonald | Cory & Albert Ging with the bike & Camper used for 2007 cross county trip

18: Renee & Bill Tucker | Kevin Scott & Megan Ferries | Johanna & Kirk Bradley | Forrest Hanvey & Son | Christine, Aymeric, Isabelle & Laurent Perraud | Garry Dean | Louise Richards, Conner & Ranger

19: CRF Shirts Heather Neuharth Seth MacDonald | Dot Grindley & Ceri Erskine | Jenny & Steve Rattray, Ceri Erskine, Vanessa & Joe Tuftnell, Dot Grindley, John | Steve Rattray & Martin Eatherley | Sion Simon

20: Joe & George Bianculli | Friend & Mitch Ford | Fran Ford | George & Janice Bianculli Janis Ford | Joe & Joanne Salois | 2007 Wine Tasting

21: Erik, Cory, John, Eric | John Oster Jr. | Mom Oster & Charlie Oster | Eric Hartman | Charlie, Lisa, Matt, John, Joe, Bob | Osterfest 2008 Rochester NY

22: Larry Hall | Dr. Rose | Dr. Seabra | Beth Foss, Marion Scott, Janet Rowley, Sondra Stateman | 2008 Conference Baltimore, MD

23: Peter Galvin, Rick & Pam Holley | Tara & Tom Driscoll | Mark & Mary Sweeney | Dave Tatro | Len Campbell | Jim Sheahan | Eric Weinstock

24: Marty & Marlyn Reiss | Donna Conway Matt Oster | Caroline & Jim Looney | Pat & Dave Schmidt | Barbara & Danielle Mcfaddlen | Valerie Sandler | Angus MacKinnon | H. Eric Hartman

25: AAO Convention, San Francisco, CA. Artman, Dr. Gerald Fishman & Cory | Marty & Marilyn Reiss, Cory MacDonald, H. Eric Hartman & Tom Driscoll | Inna Petviashvili | Tara & Jason McKinney | Benoit & Ann-Laure, Leo-Paul Gres

26: Peter Jarrett & Joyce Corinna | Andy & Ceri Erskine | Emma Salisbury & Ceri Erskine | Shades, The Penguin, Elwood & Jake Blues Holiday Parade | David & Sondra Stateman | Aaron Black (lab assistant) & Dr. Jean Bennett

27: Ellen, Earl & Robert Russell and Joy & Luke Stollings | Lisa & Jim Mucica | Cathy & Bill Cauffman | Wynette & Larry Hall, Sharyl & Danny Boren | Cory & Dr. Jean Bennett | Craig Schaller

28: Kansas City 10-16-10 | Chicago 10-11-09 | Kansas City 10-18-08 | Boston 4-22-08 | Jeff Benelli aka “Superman” Kansas City Marathon finished second in his age group. Jeff raised over $10,000 for the CRF with this one event! | Ladies From Cork Ireland 9-27-2009

29: “Paul Revere” Cory MacDonald & “Davy Crockett” Randy Wheelock | Driver - Zeke Shell & Cory MacDonald | Race to a Cure 2009 | Randy Wheelock

30: Larry Hall | Jean,Cory | Larry Hall & Karen | John, John Jr, Matt Oster | Bonnie, Brian Fenner | Lisa Vas, Cindy Price | Cindy Price, Diane & Jeff Crary | World of Beer Tasting

31: Orlando, FL “EyeCon” Convention Cory, Dawn, Cindy, Erin, Tina | Sean Sorel's CRF Tattoo | Pat & Don Ingeno | Isaac & Mari Cleveland | Sena Nunley & Family | Bob & Beth Foss Matthew & Ben

32: Jim & Cory MacDonald | Cory, Greyson Wolf, Kat & Tyrone Brown | Cory & Tisa Lynn | Wade Padgett & Cory | Kelowna for Choroideremia 6-1-2010 | Josh Hoffman

33: Nick & Faye with Theo Tuftnell | Marie Bogan & Dave Tatro | Laura & Lin Ogg | Tim & Sue Kazmierczak | Grace Jacobson | Sandra & Rollie Purvis

34: Bill & Cathy Cauffman | Alis, Cory & Chris Moen | Lauren Wilson | @Night4Sight 4/18/2010 Five Different Bands Wilmington DE | Scott Wilson

35: Chris & Alis Moen | George Rossi, David & Maria Moen, Billie Bradley | Bill & Cathy Cauffman | A Cure in Sight Wine Tasting 6/10/2010 Wilmington, DE

36: Matt Oster & Donna Conway | Charlie Oster & Friend | Osterfest Nov. 2010 Rochester, NY | John & Loron Oster

37: Randy Wheelock, John & Matt Oster, Craig Schaller, Dave Furgoch & Cory | Cory, Dave & Amita Furgoch

38: CRF Conference Seattle, WA | Cory MacDonald, Stephanos Lekandis, Dan Muller & Angus MacKinnon | Tommy & Frances Jenkins, Jeani Cunningham | Chris Moen, Loron Oster, Nick & Rachel, John Jr. & Charlie Oster | Marie Bogan, Ruth Conner, Dawn, Chuck & Sierra Voight, Diane Hale | Duck Boat Tour | Karen, Janet & Jeani

39: H. Eric Hartman, Mari Cleveland, Donna Stoess | John Oster & Tom Pettit | Stuart Fields, Beth Foss, Sharyl & Danny Boren | Karen & Cory MacDonald | Vicky Hrdy, Norma Clark, Bob & Katie Hrdy | Marty & Marilyn Reiss

40: Tim & Janet Rowley, Patrick & Sandra Morton | Loron & John Oster, Chris Moen | Maria & Mark Huyser-Wierenga, Tom Vos, Christine Rider & Barbra Vos | Dr. Vasiliki Kalatzis & Cecile du Colombier | CRF Custom made Sneakers

41: Tom & Kim Pettit | Kevin, Mike & Colleen McCarthy, Sandy Morton | Patrick Morton, Dawn McCarthy, Aaron Bannasch | Linda Lund & Sena Nunley, Eric Hartman & Dr. MacDonald | Angus MacKinnon, Tom & Kim Pettit, Barb & Neil DiTrani | Justin & Tod Purvis

42: Stuart Fields, Laura & Lin Ogg, Chris & Kali, Mary Turner | Patty & Dave Schmidt, Beth Foss | Tommy & Frances Jenkins, Mari Cleveland, Donna Stoess, Bessie & Ron Downs | Kevin Scott & Megan Ferries | Ed & Marion Scott | Ty Herring, Randy Wheelock & Ruth Conner

43: Amanda Hiltz & Craig Rowley | Jim & Marsha Banks, Chris & Emily Banks | Sierra, Dawn Voight, Lisa & Rob Volker, Danny Muller, Chuck Voight | Marty & Marilyn Reiss, Barb & Keith Cameron | Sharyl & Danny Boren, Joe, Brenda, Scott & Daniele Garrison | Dr. Jean Bennett, Cecile du Colombier, Dr. Vasiliki Kalatzis, Stephanos Lekanidis

44: H. Eric Hartman & Dr. Ian MacDonald | Daniele, Scott, Brenda & Joe Garrison | Mari Cleveland, Donna Stoess | Bessie & Ron Downs | Julie & Jeff Benelli | Janet Rowley

45: Danny Muller | Mike McCarthy & Aaron Bannasch | Marion, Kevin & Megan, EJ & Deb | Group watching the CRF Documentaries | John Kelly & Angus MacKinnon

46: Justin & Tod Purvis | H. Eric Hartman, Cory MacDonald,Tod Purvis,Rob Volker | Sharyl & Danny Boren | Rob, EJ Scott, Deb, Lisa Volker | H. Eric Hartman & Rob Volker “Gangsta Blindies” | Karen, EJ Scott, Deb, Cory

47: Oct. 2010 EJ Scott, Jeani Cunningham & friends trying to get noticed by Oprah Show | Tod Purvis, EJ Scott & Justin Purvis | Rock & Roll Half Marathon 8-1-10 | Chicago Marathon EJ Scott 10-10-10 | Running 12 marathons in 12 different states in 2012 BLINDFOLDED!! All for the CRF. EJ Scott is hoping to raise an average of at least $12,000 per marathon. $144,000 total by the end of 2012.

48: Kevin, Marion, EJ | Shades 4 Sight, 9/10/2010 Long Island, New York | Kristen Ging & Megan Ferries | Kevin Scott & Megan Ferries | Ed Scott & Albert Ging

49: Diane & Joe Gullo

50: @ Night 4 Sight Bristol RI 4-15-2011 | Bob Spears Keelyn Oliveira | Bob & Suzanne Spears

51: A Cure in Sight Wine Tasting, Wilmington, DE 6-1-2011 | Bill & Cathy Cauffman, Chris Moen

52: Dr. Jean Bennett | Dr. Miguel Seabra | Dr. Ian MacDonald | Dr. Viki Kalatzis | Dr. Christian Hamel | Dr. Andrew Webster | Dr. Markus Preising | France Symposium – Sept. 22 & 23

53: Dr. Jean Bennett, Dr. Miguel Seabra, Dr. Ian MacDonald | Marie-Catherine Faure-Grés, Cecile Du Colombier, Beth Foss & H. Eric Hartman | Beth Foss & Ty Herring | Dr. Andrew Webster, Dr. Ian MacDonald, Dr. Christian Hamel, Shelly Benjamini, Cecile Du Colombier, Marie-Catherine Faure-Grés, Beth Foss | Martha Hillier & Artman

54: Race for Sight 5 or 10K on 9-25-11 Downington, PA | Chris & David Moen | Hugh & Nancy Hutchison | Sarah Hughes & Ross Hutchison | Michele Bush | Karen & Cory MacDonald

55: Charlie Oster | John & Matt Oster | Eric Hartman, John & Matt, Randy Wheelock | Pat & Lisa Oster | The Krazy Fireman | Bob Oster

56: Marion Scott & Megan Ferries | John, Bob & Martha Hillier | Charlie Oster, Kevin Scott Cory MacDonald | Ed Scott & Charlie Oster | Loron Oster | Cory, Randy & Matt

57: Artman, Randy, Marion | Martha & Bob Hillier Bob Foss & Cory | Loron Oster | Donna Conway

58: Albert Maguire, MD Associate Professor of Ophthalmology at the Hospital of the University of Pennsylvania and the Presbyterian Medical Center of Philadelphia Dr. Maguire worked closely with Dr. Bennett in the successful LCA trials. He is a member of both the University of Pennsylvania Institute for Translational Medicine and Therapeutics and the Center for Cellular and Molecular Therapeutics at The Children’s Hospital of Philadelphia. Robert MacLaren, MD, PhD Professor of Ophthalmology at the University of Oxford, Honorary Consultant Vitreoretinal Surgeon at Moorfields Eye Hospital Dr. MacLaren’s research focuses on developing new treatments, particularly using gene therapy or adult derived stem cells, for patients with retinal diseases that cause blindness. His clinical research specializes in the genetics of retinal diseases and new techniques in retinal surgery, linking translational laboratory work to clinical trials. Dr. MacLaren began Phase I clinical trial at Moorfields Eye Hospital in London that started in November 2011. Michael J. Young, PhD Associate Scientist de Gunzburg Director of the Retinal Transplantation Research Center, Assistant Professor, Harvard Medical School Dr. Young’s current research projects involve bioengineering and adult derived stem cells to treat optic neuropathy, differentiation of retinal progenitor cells into specific cell types, and repair of the diseased retina, cell rescue and transplantation. Working in conjunction with other researchers, Dr. Young’s work offers great promise that in the future the progression of diseases such as CHM will be halted, and there will be actual restoration of lost vision.

59: Miguel Seabra, MD, PhD Professor and head of the Molecular and Cellular Medicine Section, Imperial College of London Dr. Seabra developed the CHM model and continues his work to develop an effective viral vehicle for treatment in mice. Supported by funding from the CRF and Fight for Sight, he is working toward clinical trials for gene therapy for CHM in humans. Jean Bennett, MD, PhD F.M. Kirby Professor of Ophthalmology, Stellar Chance Labs, University of Pennsylvania Dr. Bennett is continuing her work for Phase III trials to follow up on her successful Phase I/II trials for gene therapy for Leber Congenital Amaurosis Type 2 (LCA2), a disorder similar to CHM. With Funding from the CRF, she has completed in-vitro studies for gene therapy for CHM and is proceeding with small-animal studies using Dr. Seabra’s model. She expects to begin Phase I/II human trials for gene therapy. Ian MacDonald, MD, CM, FCCMG, FRCSC, FCAHS University of Alberta, Professor and Chair, Chief of Ophthalmology, AHS Dr. MacDonald has worked in Choroideremia (CHM) research for over 20 years. He identified the CHM gene and mechanism of disorder and developed the genetic test for CHM. He is currently engaged in preclinical work leading to human trials for gene replacement therapy for CHM. Dr. MacDonald serves on the CRF Board of Directors and receives funding from CRF Canada.

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