The Choroideremia Research Foundation, Inc. International Conference is in 137 days !
Choroideremia Research Foundation given National Television Audience!
On January 6, EJ Scott and Dr. Jean Bennett were featured guests on HLN’s Dr. Drew show. EJ spoke about living with CHM and his fundraising efforts which include his current 12 Marathons in 12 Months Campaign. Dr. Bennett discussed the research that is leading to the genetic therapy trials here in the USA. Our thanks to both for representing the CRF so well, and thanks to Dr. Drew for giving us a voice on national television! Here is the segment:
Get Involved Now! Launch a Holiday Appeal Letter Campaign
A letter writing campaign is a great way to let friends, family, and business associates know about your passion for our cause. Click here for tips and letter templates. This is a fantastic time of year to undertake this as people are beginning to think about their year end giving. The templates make it an easy task and your holiday card list is an excellent place to start identifying those that you would like to reach out to with your story and the reality of a cure.
CHM Gene Therapy Human Trials in the United Kingdom
Click here for the audio of Dr. MacLaren’s Interview.
History has been made for the Choroideremia Research Foundation. Last week, we were notified that Dr. Robert MacLaren, in partnership with Dr. Miguel Seabra treated the first CHM patient with AAV viruses on Monday, October 24th in London. Clinical trials are now underway!
“The therapy uses a virus as a delivery vehicle that ferries DNA including the missing gene into the right part of the eye. The virus has been engineered to infect the light-sensitive cells in the retina known as photoreceptors. There the gene is switched on and becomes active. With this particular gene therapy, the treatment could provide a one-off permanent correction of the disease because the gene is thought to remain in the retinal cells indefinitely.”
“The aim of the trial is primarily to assess safety, but it will also gain initial data on how effective the treatment is.” The researchers estimate that it will take two years to know whether or not the degeneration has been stopped completely by the gene therapy.” (Please click here for the entire Seabra article.) Dr. Seabra was kind enough to send us a message and we would like to pass it along to all our members and donors:
“Let me reinforce, we wouldn´t have reached this stage without your incredible support, and this moment is the result of your hard work too! Fingers crossed that the treatment will indeed arrest progression of the disease as we all hope. The best to all, Miguel.”
The CRF would like to extend our heartfelt gratitude to Dr. MacLaren and Dr. Seabra and their colleagues for their dedication to Choroideremia research. We are anticipating positive results and look forward to learning more about the study’s progress at the Choroideremia Research Foundation Conference in Boston of June 2012!
CHM Imaging Study at U Penn enabled by Huge Advance in Retinal Imaging Technology will Accelerate Research
Canon, the worldwide company best know for cameras, is also a major innovator in medical imaging technology. Using Adaptive Optics which were developed for use in astronomy, Canon has placed four devices, one at the University of Pennsylvania where it is being used by Dr. Jean Bennett to advance Choroideremia research. This is one of only four devices of its kind in the world. Dr. Bennett is needing CHM patients to undergo this approximately one hour, non-invasive imaging procedure. If you are interested in helping Dr. Bennett with this project please email us at info@choroideremia.org. Travel to Philadelphia will be required. There is no charge for the testing. For a video on the Adaptive Optics retinal imaging technology go to our YouTube Channel at www.youtube.com/curechm.
Case Study of Gene Therapies for Retinal Dystrophies being conducted by the University of Alberta
Please consider participating in this information gathering study being conducted by the University of Alberta, where Dr. Ian MacDonald is now working. This study is about communicating genetic risks for hereditary eye conditions in with the Departments of Public Health Science and Ophthalmology at the University of Alberta, Canada.
Participation: Male patients who are affected by choroideremia are being recruited for this study. All participants must be over the age of 18. You will be interviewed for about 45 minutes to an hour about where you get information about your eye condition, how you balance living with your eye condition, and about how you feel about gene therapies.
Confidentiality: Your responses will be de-identified or described in the aggregate and therefore remain confidential.
Consent: Your participation in this research project is voluntary. You may decide if you would like to participate with no consequence to your clinical care. Additionally, participation in this research project will not promote preferred access to therapeutic interventions.
Please Contact: Shelly Benjaminy, sbenjami@ualberta.ca, 780-492-3013
12 in 12 in 12 for 12 in 2012…
EJ Scott, along with the rest of the Scott Family, has been a Champion Fundraiser for the CRF. Last time around EJ lost 80 pounds and completed the 2010 Chicago Marathon – Blindfolded!
Now EJ is setting another incredible goal for 2012. TWELVE marathons, in TWELVE months, in TWELVE different cities, in two thousand and TWELVE. His fundraising goal? TWELVE thousand dollars per marathon for a total goal of $144,000. Learn more and support EJ by clicking here.
Please use the button below to support EJ’s efforts in advancing a cure for CHM.
EJ’s first marathon in his campaign will be in Arizona in January 2012 but he is already hard at work getting ready!
First Annual International Choroideremia Research Symposium is a Big Success
The conference was held September 22-23, 2011 in Sommieres near Montpellier, France and was attended by over 30 scientists, clinicians, and researchers from around the world who are involved in CHM research. The CRF participated in this event. Click here for more on this first ever CHM focused researcher symposium. You can click here for the conference website and schedule to see the speakers list and the topics covered. A huge thank you to France Choroïdérémie for organizing this momentous event!
CureCHM.org Website now available in Sixty-five Languages
As part of our effort to become more connected with our friends for whom English is not their first language, we are Beta testing using the Google Translate Function. Just click here and then choose your desired language from the “Translate to:” drop-down box and then click the “Translate” button. Please send any feedback about this multilingual function to info@choroideremia.org.
National Institutes of Health EyeGENE Network – The Importance of Genetic Testing
When, not if, human trials begin in the USA for gene therapy to stop the progression of choroideremia, participants will be selected based upon inclusion criteria that are established for the Phase I/II study. It is also expected that the eyeGENE database will be a source used by the Phase I/II study sites for participant selection. One of those criteria will be a CHM diagnosis confirmed by genetic testing.
You can be genetically tested and know for sure about a CHM or RP Diagnosis! Click here for FAQ’s and information on how to be tested. While gene therapy for CHM is expected to benefit patients with all mutation types, other treatments are being investigated which could be specific to the type of CHM gene defect that a patients has, making testing even more important. The EyeGENE testing service is free to citizens of the United States and Canada. If you are having difficulty finding a physician that can facilitate genetic testing please contact us at info@choroideremia.org.
Another way to help – Donate Airline Miles!
The CRF does everything possible to keep operational costs low, and you can help us in doing that by donating frequent flier miles. If you would like to help in this way please email Ty Herring at ty@choroideremia.org.
Spread the Word – CRF Public Service Announcements for Radio Distribution
We now have four, 15 second PSA’s in mp3 format, ready to be distributed to your local radio stations. These stations are required to play Public Service Announcements (PSA’s) every hour. Click here here to download these files and ask your local radio stations to help spread the word about the CRF!
It takes more than funding…
The CRF needs volunteers. Share your skills and time and you will quicken the pace toward our goal of a cure. We can use help with graphic design, video production and/or management, marketing, website content, event organizing, or any other opportunity that you may have in mind. Please email info@choroideremia.org if you would like to roll up your sleeves and pitch in.
The CRF is now on YouTube, Twitter and Facebook
These are works in process so comments and suggestions are appreciated. You can find the CRF at www.youtube.com/curechm and www.twitter.com/curechm. Also please visit our Facebook Cause Page.
