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 […]
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. *** […]