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 […]
Northeast PA Support Meeting
Support Meeting- Northeast PA Third Saturday of each Month- In-Person 1:00pm – 3:00pm Eastern St. Luke's Hospital Priscilla Payne Hurd Education Room Room 104 801 Ostrum Street Bethlehem, PA 18015 You are not alone. Join us to share coping tips and connect with others. We will meet the 3rd Saturday of each month! […]
Parent and Caregiver Virtual Support Meeting
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! The THIRD Monday of every month! 8:00pm-9:00pm ET Register HERE After registering, you […]
Parent and Caregiver Virtual Support Meeting
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! The THIRD Monday of every month! 8:00pm-9:00pm ET Register HERE After registering, you […]
EFL Team Captain Rally Call
Calling all Team Captains! If you are, have ever been or are interested in becoming a Team Captain, this virtual call is for you! Energy for Life Walkathons across the country are well underway. We have volunteer planning committees hard at work and team captains fundraising and recruiting team members. You play an important part […]
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 […]
Western New York Support Meeting
"Virtual AND In-Person" Support Meeting- Western New York You are not alone. Join us to share coping tips and connect with others. We are now meeting in-person. Please let us know if you will be attending by registering HERE. The third Thursday of each month 6:00pm - 7:00pm Register in advance for this meeting. *** […]
Energy for Life Walkathon Houston
Sugar Land Memorial Park 15300 University Blvd, Sugar Land, TexasEnergy for Life Walkathon Houston Get registered at www.energyforlifewalk.org/houston - create a team, join a team or walk as an individual. When: April 22, 2023 Where: Sugar Land Memorial Park 15300 University Blvd. Sugar Land, TX 77479 Schedule of Events: 9:00 AM - Registration Starts 10:00 AM - Opening Ceremony 10:30 AM - 1 Mile […]
LHON Assistive Technology Meeting
This Zoom event is for anyone interested in discussing LHON & Assistive Technology. T
UMDF Ask the Mito Doc Webcast Series – Endocrine Complications of Mitochondrial Disease
We are looking forward to hearing from Dr. Shana McCormack and Dr. David Weber to better understand Endocrine Disorders of Mitochondrial Disease.
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 […]
Energy for Life Walk and 5K Dallas Fort Worth
River Legacy Park 701 NW Green Oaks Blvd, Arlington, TX, United StatesEnergy for Life Walk and 5K Dallas Fort Worth Get registered at www.energyforlifewalk.org/dallasfortworth - create a team, join a team or walk as an individual. When: April 29, 2023 Where: River Legacy Park Legacy Pavilion 701 NW Green Oaks Blvd Arlington, TX 76006 Schedule of Events: 7:30 AM - Runner Registration 8:30 AM - 5K […]