LHON – Midwest Connect
This call is for those living in the Midwest with an interest in LHON. Consider joining the call and sharing your experiences with others in a similar situation. This call takes place quarterly on the Third Monday of each month at 7pm-8pm Central/8:00pm-9:00pm Eastern. March 21 from 8:00pm – 9:00pm Eastern June 20 from 8:00pm […]
UMDF Ask the Mito Doc Webcast Series – Clinical Trial Readiness and Emerging Therapies for Primary Mitochondrial Disease
Dr. Mary Kay Koenig and Nicole Wilson will share information and insights on what Clinical Trial Readiness means to the future of mitochondrial medicine. Dr. Koenig will provide great insights into Emerging Therapies for PMM.
Moms of LHON-Affected “Kids of All Ages” (Wednesday)
Join us for the Moms of LHON-Affected "Kids of All Ages" virtual meeting.
Central Region Virtual Support Meeting
Central Region Virtual Support Meeting UMDF hosts regular virtual support group meetings and events for patients and families affected by mitochondrial disease. Join us to gain coping tips, share your story and connect with others. We hope you will attend and see that you are not alone. Thursday, January 26 • 7:00pm – 8:00pm Central Learn […]
Parent and Caregiver Virtual Support Meeting March 27
Parent and Caregiver Virtual Support Meeting Hello Parents and Caregivers impacted by Mitochondrial Disease! Please join us for a Parent and Caregiver Virtual Support Meeting. We will get to know each other, share resources, and build community! Join us for a VIRTUAL MEETING!*** Please note that this is not our usual date. March 27,2023 8:00pm-9:00pm […]
Rocky Mountain Virtual Support Group Meeting 2023
Join us for this special support meeting for patients and families in the Rocky Mountain Region!
Webinar – mitoSHARE – First Year Update: What We’ve Learned, and What Comes Next
mitoSHARE – First Year Update: What We’ve Learned, and What Comes Next Tune in as Dr. Philip Yeske, UMDF's Science & Alliance Officer and Nicole Wilson, mitoSHARE Registry Coordinator, gives an update on UMDF’s patient registry, mitoSHARE, one year after the platform's launch. Dr. Yeske and Nicole will also provide a primer on the importance […]
California Virtual Support Group Meeting
UMDF hosts regular virtual support group meetings and events for patients and families affected by mitochondrial disease. Join us to gain coping tips, share your story and connect with others. We hope you will attend and see that you are not alone. The first Monday of each month• 10:00am – 11:00am Pacific Learn more & […]
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: […]
Adult Virtual Support Meeting
Adult Virtual Support Meeting Hello Adults impacted by Mitochondrial Disease! Please join us for an Adult Virtual Support Meeting. We will get to know each other, share resources, and build community! Join us for a VIRTUAL MEETING! The FIRST Thursday of every month! 8:00pm-9:00pm ET Register HERE After registering, you will receive a confirmation email containing information about joining […]
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 & 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 […]