Calendar of Events
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1 event,
10th Annual Nicholas Torpey Memorial Golf Classic
Please join us as we honor Nicholas’ memory by raising funds for The United Mitochondrial Disease Foundation to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders. CLICK HERE to view the event flyer, which includes sponsorship and payment information. 10th Annual Nicholas Torpey Memorial Golf Classic Sunday, August 27, 2023 […]
1 event,
LHON Assistive Technology Meeting
LHON Assistive Technology Meeting
This Zoom event is for anyone interested in discussing LHON & Assistive Technology. T
1 event,
TK2d Virtual Support Meeting August 2023
TK2d Virtual Support Meeting August 2023
TK2d "Virtual" Support Meeting Are you or your loved one impacted by TK2 (Thymidine Kinase 2) deficiency? If so, please join us for a Virtual Support Meeting! We will get to know each other, share resources and build community! Representatives from UCB, will be joining us, Join us for a VIRTUAL MEETING! Tuesday, August 29 ,2023 […]
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1 event,
Teen and Young Adult Virtual Meet-Up Ages 16-35
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 […]
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1 event,
LHON Live! Monthly Call
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: […]
1 event,
Adult Virtual Support Meeting
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 […]
2 events,
UMDF/MitoAction – Voice of the Pyruvate Dehydrogenase Complex Deficiency (PDCD) FDA Listening Session
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
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 […]
1 event,
Energy for Life Walk: Indianapolis
Energy for Life Walk: Indianapolis
Energy 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 […]
2 events,
Energy for Life Walk: Chicago
Energy for Life Walk: Chicago
Energy 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
Energy for Life Walk: Delaware Valley
Energy 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 […]
1 event,
LHON – Texas/Oklahoma/ Arkansas/Louisiana Connect
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.
4 events,
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
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.
LHON – New England Connect
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.
LHON – New England Connect
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.
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2 events,
LHON Southeast Connect
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.
1 event,
Teen and Young Adult Virtual Meet-Up Ages 16-35
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 […]
2 events,
Energy for Life Walk: Kansas City
Energy for Life Walk: Kansas City
Energy for Life Walkathon: Kansas City 2023 When: September 16, 2023 Where: Lowenstein Park, Shelters 1 & 2 901 NW Lowenstein Drive | Lee's Summit, MO 64081 Contact: events@umdf.org Schedule of Events 9:00 am - Walk Registration & Family Fun Activities 10:00 am - Opening Ceremony 10:30 am - 1 Mile Walk Starts 12:00 […]
Northeast PA Support Meeting
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! […]
1 event,
Energy for Life Walk: Columbus
Energy for Life Walk: Columbus
Energy for Life Walkathon: Columbus 2023 When: September 17, 2023 Where: Wolfe Park Shelterhouse 105 Park Drive | Columbus, OH 43209 Contact: jordan.rogers@umdf.org Schedule of Events 9:00 am - Walk Registration 9:45 am - Opening Ceremony 10:00 am - 1 Mile Walk Starts Register Today Register today Donate now Register to walk with us […]
4 events,
World Mitochondrial Disease Awareness Week
Join friends and families from around the world on September 18-24, 2023 to raise awareness of mitochondrial disease (mito) on a global scale through educational, fundraising and advocacy activities.
CHOP 4th annual Mitochondrial Medicine Education Day
CHOP 4th annual Mitochondrial Medicine Education Day
Children’s Hospital of Philadelphia (CHOP) is hosting this full-day virtual event for clinicians, researchers and others who care for patients with complex mitochondrial disorders. Speakers will include world-renowned mitochondrial disease clinicians and researchers from CHOP, the University of Pennsylvania and other organizations. Click Here for Details!
LHON – Midwest Connect
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 […]
Parent and Caregiver Virtual Support Meeting
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 […]
3 events,
LHON – Southwest Connect
LHON – Southwest Connect
LHON - Southwest Connect This call for those living in the Southwest with an interest in LHON takes place quarterly on the third Tuesday of the month at 8:00pm Pacific. Host Donna Basse facilitates this call. Consider joining the call and sharing your experiences with others in a similar situation. Reach out to Donna Basse […]
3 events,
UMDF Ask the Mito Doc Webcast Series – Best Practices within a Mitochondrial Care Network Team – Navigating Patient Care
UMDF Ask the Mito Doc Webcast Series – Best Practices within a Mitochondrial Care Network Team – Navigating Patient Care
We are exciting to kick off the fall Ask the Mito Doc Monthly webcast series with one of the Mitochondrial Care Network Teams - join us and have your questions ready!
Moms of LHON-Affected “Kids of All Ages” (Wednesday)
Moms of LHON-Affected “Kids of All Ages” (Wednesday)
Join us for the Moms of LHON-Affected "Kids of All Ages" virtual meeting.
4 events,
UMDF and MEPAN – Special Virtual Meet the Researcher Webcast
UMDF and MEPAN – Special Virtual Meet the Researcher Webcast
Join us Thursday, September 21 at 11:00 AM ET/10:00 AM CT/8:00 AM PT Click Here to Register The UMDF is working with our MEPAN families to organize this special virtual webcast to share information from this past June's meeting in Charlotte. Speakers and/or scientific attendees with an interest or experience with Mito Transfer/Fatty Acid Synthesis […]
Western New York Support Meeting
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. *** […]
LHON – New York, New Jersey, Pennsylvania Connect
LHON – New York, New Jersey, Pennsylvania Connect
This call is for those living in New York, New Jersey, or Pennsylvania with an interest in LHON. Hosts Jim and Mary Tolve facilitate this call. Consider joining the call and sharing your experiences with others in a similar situation. There's also a Facebook group for those in New York located at this link: New […]
3 events,
CHOP 4th Annual Next Generation Therapeutics Virtual Panel
CHOP 4th Annual Next Generation Therapeutics Virtual Panel
For the past three years, the Mitochondrial Medicine team from Children’s Hospital of Philadelphia (CHOP) has convened a virtual Next Generation Therapeutics panel to spark discussion between clinicians, industry leaders, patients and families affected by mitochondrial disease. CHOP is thrilled to host the 4th Annual Next Generation Therapeutics Virtual Panel, presented by UCB, from 10 a.m. to noon […]
Teen and Young Adult Virtual Meet-Up Ages 16-35
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 […]
2 events,
Energy for Life Walk: Detroit
Energy for Life Walk: Detroit
Energy for Life Walkathon: Detroit 2023 When: September 23, 2023 Where: Rotary Park, Pavilions 3 & 4 Six Mile Rd & Hubbard St | Livonia, MI 48152 Contact: events@umdf.org Schedule of Events 9:00 am - Walk Registration, Bake Sale & Auction Kick-off 10:00 am - Opening Ceremony 10:30 am - 1 Mile Walk Starts 11:30 […]
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2 events,
Ohio Virtual Support Meeting
Ohio 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, April 27 • 12:00pm – 1:00pm Eastern Learn more & register here. Registration […]
Central Region Virtual Support 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 […]
1 event,
Teen and Young Adult Virtual Meet-Up Ages 16-35
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 […]
2 events,
Energy for Life Walk: National
Energy for Life Walkathon: National - Walk your Way! When: September 30, 2023 Where: Your neighborhood or park Contact: jordan.rogers@umdf.org Register Today Register today Donate now Register to walk with us by forming a team, joining a team, or coming out and walking as an individual. Sponsorship opportunities available for businesses of all sizes! […]
Energy for Life Walk: Southern Wisconsin
Energy for Life Walk: Southern Wisconsin
Energy for Life Walkathon: Southern Wisconsin 2023 When: September 30, 2023 Where: Fox River Park, Picnic Area #2 W264S4500 River Road | Waukesha, WI 53189 Contact: events@umdf.org Schedule of Events 9:00 am - Walk Registration 10:00 am - Opening Ceremony 10:30 am - 1 Mile Walk Starts 11:30 am - Closing Ceremony Register Today […]
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