LHON
LHON & Charles Bonnet Syndrome Connect
Many people who are affected with LHON vision also experience Charles Bonnet Syndrome (CBS), the experience of phantom images or hallucinations which co-exist with one's regular visual experience. They can be simple or complex, static or moving, color or black and white. CBS is under diagnosed, and can cause mental stress for those living with […]
Dads of LHON-Affected “Kids of All Ages”
NOTE: Unless specific to a geographic location - all LHON virtual meetings will be set in Eastern Time. The bimonthly call for Dads of LHON-Affected "Kids of All Ages" takes place on the third Wednesday of every other month at 8:00pm EST/5:00pm PST. Hosts Tony Wright and Jim Tolve host this open-discussion format call. If you're a […]
LHON Assistive Technology Meeting
This Zoom event is for anyone interested in discussing LHON & Assistive Technology. T
LHON Live! Monthly Call
NOTE: Unless specific to a geographic location - all LHON virtual meetings will be set in Eastern Time. This call is for everyone interested in LHON...those affected, carriers, or sighted supporters...all are welcome. You can speak up and share your thoughts, or just listen to what others have to say...It's your call! Hosts for the Call: […]
Navigating Education with LHON
NOTE: Unless specific to a geographic location – all LHON virtual meetings will be set in Eastern Time. This Zoom event is your chance to connect with other students, educators, parents and other sighted supporters to discuss Navigating Education with LHON. Please feel free to invite anyone who would benefit from this discussion to join […]
LHON – Teens
This call is ONLY for teens (under 18) who are affected with LHON vision loss. Hosts Jeremy Poincenot and Molly Garrone lead this call. This call takes place at 5:00pm PST/8:00pm EST every other month on the first Tuesday of the month for an hour and a half unless otherwise noted.
Moms of LHON-Affected “Kids of All Ages” (Wednesday)
Join us for the Moms of LHON-Affected "Kids of All Ages" virtual meeting.
LHON – Pacific Northwest Connect
This is a call for those living in the Pacific Northwest with an interest in LHON. Consider joining the call to share your experiences with others in a similar situation.
LHON Sisterhood
Are you a woman who carries an LHON mutation? Whether you're affected by LHON symptoms or not, you're invited to be part of the LHON Sisterhood! This community is intended to provide a safe space for all women who carry an LHON mutation to discuss topics specific to navigating life as a woman impacted by carrying an LHON mutation.
LHON Live! Monthly Call
NOTE: Unless specific to a geographic location - all LHON virtual meetings will be set in Eastern Time. This call is for everyone interested in LHON...those affected, carriers, or sighted supporters...all are welcome. You can speak up and share your thoughts, or just listen to what others have to say...It's your call! Hosts for the Call: […]
LHON – Teens
This call is ONLY for teens (under 18) who are affected with LHON vision loss. Hosts Jeremy Poincenot and Molly Garrone lead this call. This call takes place at 5:00pm PST/8:00pm EST every other month on the first Tuesday of the month for an hour and a half unless otherwise noted.
LHON Southeast Connect
This call is for those living in Georgia and Florida, with an interest in LHON. Consider joining the call and sharing your experiences with others in a similar situation.