@curechm.bsky.social
Funding research, raising awareness, and advocating for those affected by choroideremia—a rare inherited retinal disease that causes blindness. www.curechm.org
FDA Unwraps ‘Plausible Mechanism Pathway’ for Personalized Therapies
www.biospace.com/fda/fda-unwr...
A Science and Research Update with Dr. Jess Thompson
youtu.be/M4U1wuAvZjk?...
Parents Chat: Join other parents in the CHM community for discussions about life, care, and hope for the future.
NEW! Parents Chat:
Our first session will be A Science and Research Update from Dr. Jess Thompson. He will share the latest updates in CHM research and answer your questions about what’s ahead for the community.
Monday, Nov 10th | 8PM EST - Register to join!
curechm.salsalabs.org/parentchat11...
Ever wondered whether a guide dog might be right for you? CHMers Bob Hrdy, Mike Martens, and John Trott recently shared their personal experiences, from the decision to apply to training and daily life with their canine partners.
youtu.be/_NAiVDTuEoQ?...
Picture collage of Team CHM runners at the 50th Marine Corps Marathon and TCS NYC Marathon.
Team CHM crushed the 2025 Marine Corps & NYC Marathons! Every mile raised awareness & support for CHM research—your dedication inspires us all. #TeamCHM #CureCHM
04.11.2025 21:34 — 👍 0 🔁 0 💬 0 📌 0
Patient Advocacy: Why It Matters for the Choroideremia Community
Learn how patient advocacy helps shape research, influence policy, and create meaningful change for the CHM community.
youtu.be/kFDO6UtYZwo?...
Stay connected with us beyond BlueSky! Follow the Choroideremia Research Foundation on LinkedIn for the latest research updates, events, and more: www.linkedin.com/company/cure...
28.10.2025 20:38 — 👍 0 🔁 0 💬 0 📌 0
When his son was diagnosed with Choroideremia, Dr. Tom Barker, UVA professor & CRF Research Committee Member, redirected his lab’s focus. He’s not waiting for a miracle; he’s working now to slow the disease’s progression & buy his son more time.
news.virginia.edu/content/diag...
Choroideremia Research Foundation Awards Alice Y. Zhang, MD, the 6th Annual Randy Wheelock Research Award
www.einpresswire.com/article/8602...
Over 100 community members of Weiser, Idaho come together to support the CRF at the Nordgren Family 5K.
A huge thank you to Tara Andrus Nordgren & her family for organizing the Nordgren Family 5K in Weiser, ID! Your dedication & hard work, along with the amazing support of your community, helped raise over $10,000 for the Choroideremia Research Foundation (CRF).
21.10.2025 21:02 — 👍 0 🔁 0 💬 0 📌 0
Join CRF’s Eric Hartman on Oct 23 to learn how patient advocacy drives research, legislation & support for the global Choroideremia community! Click the link to register.
curechm.salsalabs.org/patientadvoc...
Neal Bench, CRF President, awarding Alice Zhang, MD the 2025 Randy Wheelock Award. They are posing with three men from the UNC Ophthalmology team.
CRF proudly presents the 6th Annual Randy Wheelock Research Award to Dr. Alice Y. Zhang of UNC–Chapel Hill for advancing research in choroideremia (CHM).
17.10.2025 15:39 — 👍 0 🔁 0 💬 0 📌 0
Group of 84 golfers who attended Course to a Cure fundraiser.
Group of four guys raising their drinks and giving cheers on the golf course.
Cole Schroeder Golf Outing Est. 2025 Course to a Cure Saving Sight - Building Hope Banner
Course to a Cure Cole Schroeder golf outing was a huge success! ⛳ 12 volunteers & 84 golfers at Westchester GC raised $6,200+ for CHM research! #Choroideremia #GolfForACause
16.10.2025 20:14 — 👍 0 🔁 0 💬 0 📌 0
An image of a crosswalk with Cory MacDonald posing with his white cane. Text that says October 15, 2025 White Cane Safety Day. Celebrating independence, awareness, and mobility for people who are blind or visually impaired.
October 15th marks White Cane Safety Day—celebrating independence, mobility, and confidence for people with vision loss.
#WhiteCaneSafetyDay #Accessibility #CureCHM #VisionLossAwareness #Choroideremia
Group of 30 people who attended the fundraiser to work out at Good Movement Studio in Park City, Utah. The group is standing outside with mountains in the background.
Michelle, Damon, and Brixton Holbrook posing together by the juice and coffee station.
Huge thanks to Michelle Holbrook & family for their CHM FUNdraiser #6! Amazing turnout, energy, & generosity supporting the CHM community. #CureCHM
14.10.2025 18:38 — 👍 0 🔁 0 💬 0 📌 0
Text: Save the date! CRF International Conference at the Drury Plaza Hotel, Orlando Disney Springs. June 23–26, 2027. Pictured: Kathi Wagner, CRF Executive Director, and Drury Hotel Team Members, including CHMer, Patrick Heafner.
Save the date! The CRF International Conference is coming June 23–26, 2027 at the Drury Plaza Hotel, Orlando Disney Springs!
10.10.2025 15:35 — 👍 0 🔁 0 💬 0 📌 0
Image: Dark blue background with graphic of continents, the CRF logo, and an eye icon. Text: 2025 World Sight Day: Raising Awareness for Vision Loss & Global Eye Health
🌍 World Sight Day 2025! CHM research needs your support to fund labs, trials & breakthroughs. No cure yet—but hope drives progress. 💙 Donate: curechm.salsalabs.org/donate/index...
09.10.2025 17:22 — 👍 0 🔁 0 💬 0 📌 0
Accessing Local Disability Services with Corbb O'Connor, National Federation of the Blind of MN
youtu.be/XP44tL_Qa2Q?...
CRF Research Spotlight: Panel Discussion / Q&A with Ben Shaberman, Dr. Kathleen Boesze-Battaglia, Dr. Malia Edwards, Dr. Joseph Porter, and Dr. Ian MacDonald
youtu.be/zMHmjDUiiNE?...
Navigating Your Ophthalmology Visit with Dr. Rachel Huckfeldt
youtu.be/NHPiL0hT_2Y?...
Female Carriers of Choroideremia with Dr. Sena Gocuk
youtu.be/KE5N0MW7LT8?...
Gene Therapy Updates with Dr. Robert MacLaren
youtu.be/eMwmEXs3FtE?...
Choroideremia Research Foundation Logo. Text: October is World Blindness Awareness Month Icons: Guide Dog, Eye, Blindness Awareness White Ribbon, White Cane
October is World Blindness Awareness Month! At the CRF, we are committed to helping those affected by choroideremia (CHM) through research, patient support, and community initiatives.
Support our mission: curechm.salsalabs.org/donate
#WorldBlindnessAwarenessMonth #CureCHM
Are you a person living with an Inherited Retinal Degeneration?
Please help Retina International by completing an online survey that aims to understand the mental and emotional impact of IRDs. This survey will close on 15th November 2025.
retina-international.org/survey/
Group photo of participants in Team CHM gear at the Mesa Sprint Tri
Group of people holding curechm.org towels by the pool at the Mesa Sprint Tri
Huge thanks to Jess Thompson and his cardiac practice for sponsoring the Mesa Sprint Tri and sharing these great shots! Grateful for your support and for helping spread CHM awareness.
#TeamCHM #MesaSprintTri #CureCHM
Nutrition, Diet & Exercise for CHM Health with Dr. Katie Bales
youtu.be/AyYkzWy8J-8?...
#CureCHM #Choroideremia #RareDiseaseCommunity
CRF Research Spotlight: tRNA Editing of Nonsense Mutations with Dr. Joseph Porter
youtu.be/bmd1d9IytF0?...
#SavingSight #RetinaResearch #RareDiseaseAdvocacy
CRF Research Spotlight: ASO Therapies with Dr. Ian MacDonald
youtu.be/Kt-7oQVn2nc?...
#RareDiseaseCommunity #VisionResearch
CRF Research Spotlight: Collagen Mimetic Peptides with Dr. Malia Edwards
youtu.be/ZgF3D6DeOGU?...
#Choroideremia #RareDisease #RetinaResearch
CRF Research Spotlight: Restoring Metabolic Homeostasis with Dr. Kathleen Boesze-Battaglia
youtu.be/tsJr3HUD3_c
#Choroideremia #RareDisease #SavingSight #RetinaResearch
