LHON Assistive Technology Meeting
This Zoom event is for anyone interested in discussing LHON & Assistive Technology. T
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
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.
UMDF/MitoAction – Voice of the Pyruvate Dehydrogenase Complex Deficiency (PDCD) FDA Listening Session
The U.S. Food and Drug Administration (FDA) has just confirmed a virtual FDA listening session, co-hosted by the United Mitochondrial Disease Foundation and MitoAction, focused on Pyruvate Dehydrogenase Complex Deficiency (PDCD). The session, The Voice of the Pyruvate Dehydrogenase Complex Deficiency (PDCD) Patient Community, will be held virtually on Friday, September 8, 2023 from 1:00pm to 2:30pm ET. FDA listening sessions […]
Teen and Young Adult Virtual Meet-Up Ages 16-35
UMDF Teen/Young Adult "Virtual Meet-Up" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Meet-Up! Join us for this "Virtual Meet-Up"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! UMDF Support Ambassadors, Kristi […]
Energy for Life Walk: Indianapolis
Coxhall Gardens Children's Pavilion 11677 Towne Road, Carmel, INEnergy for Life Walkathon: Indianapolis 2023 When: September 9, 2023 Where: Coxhall Gardens Children's Pavilion 11677 Towne Road | Carmel, IN 46032 Contact: events@umdf.org Schedule of Events 10:00 am - Walk Registration 11:00 am - Opening Ceremony 11:15 am - Walk Starts Register Today Register today Donate now Register to walk with us by […]
Energy for Life Walk: Chicago
Katherine Legge Memorial Park 5901 County Line Road, Hinsdale, IL, United StatesEnergy for Life Walkathon: Chicago 2023 When: September 10, 2023 Where: Katherine Legge Memorial Park 5901 S County Line Road | Hinsdale, IL 60521 Contact: events@umdf.org Schedule of Events 9:00 am - Walk Registration, Music, & Activities! 10:00 am - Opening Ceremony 10:30 am - Walk Starts 11:30 am - Picnic and Closing Ceremony […]
Energy for Life Walk: Delaware Valley
Pennington Park 801 Creek Road, Delanco, New JerseyEnergy for Life Walkathon: Delaware Valley 2023 When: September 10, 2023 Where: Pennington Park 801 Creek Road | Delanco, NJ 08075 Contact: jordan.rogers@umdf.org Schedule of Events 10:30 am - Walk Registration 11:30 am - Opening Ceremony 12:00 pm - 1 Mile Walk Starts Register Today Register today Donate now Register to walk with us […]
LHON – Texas/Oklahoma/ Arkansas/Louisiana Connect
This call is for those living in Texas, Oklahoma, Arkansas and Louisiana, with an interest in LHON. Host Donna Basse facilitates this call. Consider joining the call and sharing your experiences with others in a similar situation.
TK2d Awareness Day
Join us as we mark the second global TK2d Awareness Day. Thymidine kinase 2 deficiency (TK2d) is a rare genetic mitochondrial disease that causes muscle issues often severely impacting a patient's motor skills, breathing, and eating. TK2d is caused by inherited mutations in TK2, a nuclear gene responsible for making a mitochondrial enzyme called thymidine […]
LHON – New England Connect
This is a call for those living in New England with an interest in LHON. Consider joining the call to share your experiences with others in a similar situation.