Cure In Sight
Wine Tasting!
Chris and Alis Moen are once again
hosting their Cure In Sight Wine Tasting.
 Come join them in Wilmington, DE on Saturday, May 5th for a tasting of fantastic wines and sumptuous finger foods while listening to live music and enjoying the
beautiful Delaware Center for Horticulture. Click Here for all the details and to purchase your tickets!
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Volunteer Today
The CRF needs volunteers. Share your skills and time and you will quicken the pace toward our goal of a cure.
Please email info@choroideremia.org if you would like to join a CRF workgroup or use the Take Action button to learn more.
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Introducing:
Dr. Gang Luo
Dr. Gang Luo of Schepens Eye Institute in Boston will be one of our featured speakers at this year's International Conference in Boston, MA. Dr. Luo works in the field of adaptive technologies for people with low vision. He will be presenting information on an augmented vision system that is designed to help people with tunnel vision expand their visual field, and will also briefly speak about their latest computer vision system that can help visually impaired people avoid collisions. You will have an opportunity to meet and ask questions of him and the other speakers who will be presenting at the conference! This is an opportunity for you to get the latest, up to the minute information on adaptive technologies and CHM research directly from the source.
Click here for details on the conference, including the full agenda, conference registration and booking your hotel room. Don't forget, the cutoff date for booking your room and registering for the CRF Conference is May 1st. Make your plans now and we'll see you in Boston, MA in June, where we'll be making CHM history!
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New Englanders: Mobility Study at Brown University
Schepens Eye Research Institute in Boston, in conjunction with Brown University in Providence, RI is conducting a mobility study for persons with tunnel vision. The study requires two visits, one to the Schepens Lab in Boston for screening and the other to Brown University for the actual study. Travel costs are reimbursed and you will be paid for participating in the study. This is a non-invasive study conducted in a virtual reality room. If you are interested, have questions or would like more information, contact Cory MacDonald by email at cory@choroideremia.org or you may call him at 413-781-2274.
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Your email address will not be shared or used for any other purpose.
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Please Share this Newsletter with
Friends and Colleagues
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Click the pledge button to learn about becoming a financial supporter of the CRF
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Choroideremia Research Foundation, Inc.
Contact:
Ty Herring, CFRE
Executive Director ty@choroideremia.org
T (254) 717-6617
Beth Foss
President
T (507) 301-4366 |
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The CRF Supports International Research and Recently Funds
Dr. Mariya Moosajee
Truly exciting times are occurring in Choroideremia research. There are gene therapy studies being conducted in the United States, the U.K. and most recently in Canada as well as stem cell studies in France and Portugal. Add to that list a new scope of study and a new doctor to the CRF: Dr. Mariya Moosajee.
Several months ago the Chroroideremia Research Foundation received Dr. Moosajee's proposal to study the effects of a medicine - Ataluren (PTC-124) and how it could potentially prevent chorioretinal degeneration and functionally rescue the REP1 protein that is being lost in CHM, specifically to the non-sense mutation. Ataluren is a medicine that is currently in Phase III trials to treat Cystic Fibrosis. Her research proposal outlined a timeframe of 18 months. The Board of Directors approved a motion to fund Dr. Moosajee's research and we are very excited to watch the progression of research in a direction that the Foundation has not ventured to until this point.
I would like thank all of our members and friends who have financially supported innovative research, such as Dr. Moosajee's work, as well as Dr. Bennett, Dr. Kalatzis, and Dr. Seabra. This is an incredible time to be involved with the Choroideremia Research Foundation. Thanks to you, we are funding gene therapy with one of the brightest minds of our time in Jean Bennett, Stem Cell Therapy to develop a cellular model of the retina to test treatments (such as Dr. Moosajee's) with Viki Kalatzis, and once again, Miguel Seabra is taking the Foundation to new heights by conducting a study to generate iPS stem cells, change them into retinal cells and establish them into functional RPE and potentially restore lost vision. With Dr. Moosajee's research, the CRF has the opportunity to fund a pharmacologic approach to potentially retard or stop the progression of visual deterioration in one of the three types of gene mutations. And speaking personally, this mother is sleeping more soundly knowing that the Foundation is doing all it can, on multiple levels, to rid our world of CHM.
Beth Foss President ____________________________________ |
CRF CONFERENCE SPONSORSHIPS!
We are looking forward to a very successful conference in Boston. A sponsorship program has been added to this year's program to help with our conference expenses. Sponsorships will be available beginning at $250 and moving up to $10,000. If you are interested in becoming a sponsor, please go to our conference website and look for sponsorship information. Although we work hard to limit our conference expenses, we reduce the price of the conference fee to allow more of our members to attend. For sponsorship information, please click here.
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Canadian Choroideremia Research Foundation to help fund Dr. Ian MacDonald's Gene Therapy Research
The Foundation Fighting Blindness and the Choroideremia Research Foundation Canada are joining with federal funders at the Canadian Institutes of Health Research (Institute of Genetics and the Institute of Neurosciences, Mental Health and Addiction) to announce a $1.3 million research partnership studying the use of gene therapy for Choroideremia.
With a five-year funding commitment from this research partnership, Dr. MacDonald, Chair of the Department of Ophthalmology in the Faculty of Medicine & Dentistry at the University of Alberta, and his colleagues will initiate the first human clinical trial of a treatment for Choroideremia in Canada, and continue their investigations of the disease's underlying causes. "Gene therapy for Choroideremia aims to insert a healthy copy of the REP-1 gene into the cells of the retina," says Dr. MacDonald, "allowing these cells to produce the proteins absent in men with this condition. If successful, the therapy would have the potential to restore some visual function and prevent further vision loss."
"Bringing the research to this point has truly been an international effort," says Robert Hillier, President of the Choroidermia Research Foundation Canada, "and Canadian scientists, such as Dr. MacDonald, have been leaders in that effort. By partnering with CIHR and the Foundation Fighting Blindness we hope to change the future for people and families with Choroideremia in Canada and around the world." In order to assist the Canadians to meet their goals, the CRF will be working collaboratively to provide a matching financial grant up to $22,500 in matching funds.
Team investigators plan to begin recruiting participants as soon as the regulatory requirements for this trial can be put in place, likely by the end of this year. In addition to the families with Choroideremia already involved with Dr. MacDonald's research program at the University of Alberta, the project team will use the Foundation Fighting Blindness Patient Registry to contact participants and will reach out to potential participants through the Choroideremia Research Foundation Canada.
To read more about this exciting grant and the Canadian Choroideremia Research Foundation go to http://www.choroideremia.ca/.
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CRF Member Profile:
Meet Jeff Benelli
Jeff Benelli is a 46 year old CHMer from the Kansas City area, diagnosed in 1994. He is married and a father of two sons who are his main hobby, as well as a lifelong interest in staying physically fit. Jeff works as an Actuarial Analyst for Swiss Re and serves on the CRF Board of Directors. We sat him down and asked him a few questions.
How has CHM affected you? CHM has not caused me death, but has taken the life I knew and loved away from me.
What adjustments have you had to make? I started working from home. I've learned to move slower and tend to shuffle my feet a lot.
Do you use any adaptive technologies or aids? Outside of using a cane and flashlight, I haven't really explored any other adaptive technologies or aids at this point.
How do you feel about the current CHM research? You have to think of our goals, and one of them is to stop the progression. What is going on right now is thrilling!
Have you held or participated in any CRF fundraising events? I ran six marathons in five years, placing in the upper rankings for my age group. My company holds an annual Corporate Jeans Day in my honor. I have conducted letter writing campaigns to support my marathon runs and I've told friends and family that the best gift they can give me for my Birthday or Christmas is to make a donation to the CRF. (Editor's Note: Over the last two years, Jeff has raised almost $40,000!)
What advice can you give to your fellow CHMers? The biggest is to realize that as a CHMer or someone who is connected to a CHMer, there is no "they", there is only "us". No "they" is going to do anything for "us", we must do it ourselves. Be a part of "us" so we can fix this. It will make you feel better about living with CHM and push us towards the cure quicker.
Any last words? My sincere gratitude goes to everyone who has supported the CRF, big or small, and I hope you continue to support us as we move forward towards our goal.
Check out Jeff's website at www.jeffbenelli.com.
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