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Choroideremia Research Foundation - Cure CHM
United States
Приєднався 4 жов 2010
The Choroideremia Research Foundation's mission is to raise funds in support of scientific research leading to a treatment or cure of choroideremia, a hereditary retinal-degenerative disease that causes blindness; to educate people affected by the disease; and to inform the public. Visit us at www.curechm.org.
Saving Sight is our Vision!
Saving Sight is our Vision!
Outcome Measures in CHM Clinical Trials
Amandeep Josan, PhD is a research Optometrist working alongside Robert MacLaren, FMedSci, FRCOphth, FRCS, FACS, VR at the University of Oxford Eye Hospital. As an Optometrist Dr. Josan works primarily on visual function outcome measures in clinical trials. Since the announcement that the phase 3 choroideremia “STAR” clinical trial did not meet its primary endpoint (with similar concerns in many other inherited eye conditions) there has been renewed focus on deciding appropriate outcome measures in CHM clinical trials. So far this interest has sparked much conversation with some agreement regarding changes and directions for future related clinical trials. These changes are considered essential in order to progress future clinical trials to an approved treatment. However, due to the lack of empirical evidence, new outcome measures have been slow to be adopted by regulatory agencies. New work by Dr. Josan hopes to address this gap by using statistical methods adopted from professional sports to highlight which visual function tests should be utilized in future clinical trials.
Переглядів: 675
Відео
Photoreceptor Structure-Function Relationships in CHM
Переглядів 309Місяць тому
Niamh Wynne, MBBCh, Postdoctoral Fellow, Medical College of Wisconsin, and Angela Xu, Medical Student, from the University of Pennsylvania Perelman School of Medicine, will be presenting new choroideremia (CHM) imaging research from their lab. In this project, they investigated cone photoreceptor function in CHM compared to normal-sighted participants and found many CHM patients showed reduced ...
Retinal Oxygen Metabolic Function in Choroideremia
Переглядів 3174 місяці тому
In this webinar, Giacomo Calzetti, MD, Ophthalmologist, Institute of Molecular and Clinical Ophthalmology Basel (IOB), presented his latest findings on retinal oxygen metabolic function in CHM. Choroideremia has the clinical features of a rod-first disease, meaning that loss of rod function predominates early in the disease course, similar to what occurs in retinitis pigmentosa. However, more p...
Improving Vision with Non-invasive Bioelectricity - A New Hope
Переглядів 1,1 тис.5 місяців тому
Presentation provided by: Dong Feng Chen, MD, PhD, Schepens Eye Research Institute of Mass Eye and Ear, Department of Ophthalmology, Harvard Medical School Emerging research has shown that transpalpebral (eyelid) electrical stimulation (ES) of the eye may be a powerful method for preserving vision in otherwise irreversible blinding diseases such as choroideremia (CHM) among others. This approac...
Investigating patterns of gene expression in choroideremia iPSC-RPE
Переглядів 4225 місяців тому
Join us as Katy Linkens, PhD student at the University College of London Institute of Ophthalmology, presents her research "Investigating patterns of gene expression in choroideremia iPSC-RPE". Choroideremia affects many different cell types in the retina. One key cell type that is affected is the retinal pigment epithelium (RPE). The RPE is a highly specialized tissue, that needs tight regulat...
2024 ARVO Interview with Dr. Yin Shen, Wuhan University (Chinese)
Переглядів 587 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Dr. Yin Shen, Vice President and Professor, Renmin Hospital of Wuhan University, China, at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
Interview with Dr. Juliana Maria Ferraz Sallum at ARVO 2024 (Portuguese)
Переглядів 607 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Juliana Maria Ferraz Sallum, MD, PhD, Ophthalmology Professor at the Federal University of São Paulo in Brazil, at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
2024 ARVO Interview with Dr. Dror Sharon (Hebrew)
Переглядів 577 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Dror Sharon, PhD, from The Sharon Laboratory at the Department of Ophthalmology, Hadassah - Hebrew University Medical Center in Israel at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
Interview with Dr. Ivan Conte at ARVO 2024 (Italian)
Переглядів 347 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Ivan Conte, PhD, Associate Professor at University of Naples Federico II, Italy, at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
2024 ARVO Interview with Dr. Marcus Preising (German)
Переглядів 307 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Markus Preising, PhD, Department of Ophthalmology Faculty Member, Justus-Liebig-University Giessen in Germany at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
ARVO 2024 Interview with Team CHM TCS New York City Marathon Runner Cindy Hoppe
Переглядів 437 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Cindy Hoppe, PhD Student at Schepens Eye Research Institute, Harvard Medical School, at the Association for Research and Vision in Ophthalmology (ARVO) Conference in Seattle, May 2024. Cindy is fundraising for CRF by running in the 2024 TCS New York City Marathon with Team CHM.
ARVO 2024 Interview with Rare-X Karmen Trzupek
Переглядів 457 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Senior Director of Scientific Programs Karmen Trzupek from Rare-X at the Association for Research and Vision in Ophthalmology (ARVO) Conference, May 2024.
Interview with Dr. Ivan Conte at ARVO 2024 (Spanish)
Переглядів 297 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Ivan Conte, PhD, Associate Professor at University of Naples Federico II, Italy, at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
ARVO 2024 International Choroideremia Research Network Meeting
Переглядів 847 місяців тому
Networking at the International Choroideremia Research Network (ICRN) Breakfast at the Association for Research and Vision in Ophthalmology (ARVO) Conference in Seattle, May 2024.
ARVO 2024 Interview with Retina International's Dr. Nabin Paudel
Переглядів 507 місяців тому
H. Eric Hartman, CRF Director of Advocacy, interviews Retina International's Head of Research and Programs Nabin Paudel, PhD, at the Association for Research in Vision and Ophthalmology (ARVO) Conference in Seattle, May 2024.
Intracortical Visual Prosthesis (ICVP) Research Study - Presentation by Philip R. Troyk, PhD, IIT
Переглядів 55410 місяців тому
Intracortical Visual Prosthesis (ICVP) Research Study - Presentation by Philip R. Troyk, PhD, IIT
CRF 2022 International Conference - Paul and Agnes
Переглядів 5211 місяців тому
CRF 2022 International Conference - Paul and Agnes
Meet Andy Burstein from Accessible Pharmacy
Переглядів 62Рік тому
Meet Andy Burstein from Accessible Pharmacy
Biogen CHM Clinical Trial Findings! Meet Dr. Robert MacLaren
Переглядів 1,3 тис.Рік тому
Biogen CHM Clinical Trial Findings! Meet Dr. Robert MacLaren
Meet Samarendra Mohanty with Nanoscope Therapeutics
Переглядів 2,8 тис.Рік тому
Meet Samarendra Mohanty with Nanoscope Therapeutics
CRF Research Funding Update for Regional Meetings
Переглядів 77Рік тому
CRF Research Funding Update for Regional Meetings
Choroideremia Research Landscape Overview for Regional Meetings
Переглядів 169Рік тому
Choroideremia Research Landscape Overview for Regional Meetings
Choroideremia 101 including Inheritance Patterns
Переглядів 417Рік тому
Choroideremia 101 including Inheritance Patterns
Meet a CHM Family Member - Mike and Aurelie Harp
Переглядів 147Рік тому
Meet a CHM Family Member - Mike and Aurelie Harp
ARVO 2023 - H. Eric Hartman Interviews Dr. Viki Kalatzis
Переглядів 191Рік тому
ARVO 2023 - H. Eric Hartman Interviews Dr. Viki Kalatzis
ARVO 2023 - H. Eric Hartman Interviews Drs. Markus Preising and Ian MacDonald (German)
Переглядів 42Рік тому
ARVO 2023 - H. Eric Hartman Interviews Drs. Markus Preising and Ian MacDonald (German)
ARVO 2023 - H. Eric Hartman Interviews Drs. Markus Preising and Ian MacDonald
Переглядів 55Рік тому
ARVO 2023 - H. Eric Hartman Interviews Drs. Markus Preising and Ian MacDonald
Always about prevention what about reversing7
Hi Doug: Please check out the videos on "Stem Cell Therapy" on our UA-cam channel for more information on this research: ua-cam.com/video/JJtrbCzTG3Y/v-deo.html
I have a mutated Gene I am wondering research wise how much has actually been done into alternative treatments for instance hyperbaric therapy is meant to help to repair Gene mutations I have seen with some studies do you think it could help my vision thanks
Please contact me at kathiwagner@curechm.org or 312-550-8122 and I'd be happy to schedule a Zoom chat to discuss all the current therapies for CHM in development -thanks!
I am a patient of choriderimia.. Have a treatment of choriderimia?
There are currently no approved treatments for choroideremia, however, there are things you can do to try and keep your eyes healthy overall, please visit: www.curechm.org/for-patients-families/ for more information. We also encourage you to sign up for our e-newsletters which will provide information on upcoming virtual and in-person events focusing on research and patient/family education/networking: www.curechm.org/get-involved/#getnews
My daughter has choroideremia and now her son just got diagnosed with it also. My daughter's issue the Drs said might not progress. Now my grandson don't know. It's devastating
Hi Mary: We would be happy to connect you or your daughter to other parents of children with CHM, we have two chat groups that meet regularly. Please also be sure to sign up for our e-newsletter, we have regular educational webinars and conferences regarding potential therapies in development and many other resources on our website: www.curechm.org
Hasn't this line of research now halted?
Hi Paul - This video was recorded 10 years ago, we have lots of new content about therapies in development on our CureCHM UA-cam channel, hope you will check them out!
Thank you for posting this. I'm a 65 year old male, I guess I've been relatively lucky as my choroideremia has been slow onset, and although I stopped driving about 14 years ago, it was only in 2017 that I told my ophthalmologist that I was starting to experience real difficulties.
Hi Paul - Please sign up to receive our e-newsletters at www.curechm.org as there are many mutation agnostic optogenetic and other therapies currently in development that may have potential for later stage CHM patients.
Amazing step forward to a cure 😭
Let’s do fundraising in California I will be willing to participate and am waiting for human trials 🙏
Go bulldogs CSUF💫
I have choroideremia and was recently told that gene therapy would not help me due to my vision being too far gone. The only hope is stem cell therapy. Can anyone please help me to find help.? Please.😞
Can you contact Jay Cruz Semple on facebook about gene therapy?
Is there a cure I am not aware, beside some of the current trials going on? How do we become part of trials if our sight is almost 0/100?
Have you contacted the Choroideremia Research Foundation at info@curechm.org?
Same condition my self also god will help us, please share any treatment u found purushothviney@gmail.com
Please contact the Choroideremia Research Foundation at 800-210-0233 for information on clinical trials for which you may qualify.
I'm very proud of you, Jeff.