Calendar of Events
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TK2d Virtual Support Meeting April 2021
TK2d Virtual Support Meeting April 2021
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 Zogenix, will be joining us, Join us for a VIRTUAL MEETING! Tuesday, April 27,2021 12:00 […]
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Teen and Young Adult Virtual Happy Hour Ages 16-35
Teen and Young Adult Virtual Happy Hour Ages 16-35
UMDF Teen/Young Adult "Virtual Happy Hour" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Happy Hour! Join us for this alcohol-free "Virtual Happy Hour"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! […]
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LHON – Teens
LHON – Teens
LHON Teens This call is for all teens (under 18) affected by LHON. Hosts Jeremy Poincenot and Molly Garrone will lead this call. This call takes place at 5:00pm PST/8:00pm EST every other month on the first Tuesday of the month unless otherwise noted. Reach out to Molly Garrone at mollyeknox@gmail.com with any questions. Consider […]
Heartland States Virtual Support Meeting ( St. Louis Area, MO,IL,KS,NE)
Heartland States Virtual Support Meeting ( St. Louis Area, MO,IL,KS,NE)
"Virtual" Support Meeting- Heartland States St. Louis area invites our friends in Missouri, Illinois, Kansas and Nebraska to join us for a VIRTUAL MEETING! You are not alone. Join us to share coping tips and connect with others. First Tuesday of every month 7:00pm - 8:00pm CT Register in advance HERE After registering, you will […]
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LHON Live! Monthly Call
LHON Live! Monthly Call
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: Jessica Loomer and Andy Marks Reach out to Jessica Loomer at jessica.loomer@gmail.com or Andy Marks at marks.andy.c@gmail.com with […]
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Teen and Young Adult Virtual Happy Hour Ages 16-35
Teen and Young Adult Virtual Happy Hour Ages 16-35
UMDF Teen/Young Adult "Virtual Happy Hour" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Happy Hour! Join us for this alcohol-free "Virtual Happy Hour"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! […]
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LHON – Young Adults
LHON – Young Adults
LHON Young Adults This call is for all young adults (18 and over) affected by LHON. Hosts Jeremy Poincenot and Molly Garrone will lead this call. This call takes place at 5:00pm PST/8:00pm EST every other month on the second Tuesday of the month unless otherwise noted. Reach out to Molly Garrone at mollyeknox@gmail.com with […]
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Navigating Education & LHON
Navigating Education & LHON
Navigating Education & LHON This call takes place a few times each year at 8:00pm EST/5:00pm PST and is hosted by Scarlet Keolanui Dreifuss. If you are interested in LHON and education-related matters, you are invited to join. Reach out to Scarlet Keolanui Dreifuss at scarletkeolanui@gmail.com with any questions. Tuesday, February 23, 2021 at 5:00pm Pacific/8:00pm Eastern […]
UMDF Ask the Mito Doc Webcast Series – Drug Development for Mitochondrial Disease – May 2021
UMDF Ask the Mito Doc Webcast Series – Drug Development for Mitochondrial Disease – May 2021
Join us to hear from Matthew Klein, MD, on the many lessons learned over the years in drug development for mitochondrial disease.
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Teen and Young Adult Virtual Happy Hour Ages 16-35
Teen and Young Adult Virtual Happy Hour Ages 16-35
UMDF Teen/Young Adult "Virtual Happy Hour" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Happy Hour! Join us for this alcohol-free "Virtual Happy Hour"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! […]
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Northeast PA Virtual Greet Support Meeting 2021
Northeast PA Virtual Greet Support Meeting 2021
"Virtual" Support Meeting- Northeast PA Join us for a VIRTUAL MEETING! You are not alone. Join us to share coping tips and connect with others. We will meet the 3rd Saturday of each month! 1:00pm - 3:00pm You must register in advance for this meeting. Register HERE After registering, you will receive a confirmation […]
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LHON – California Connect
LHON – California Connect
This is a call for those living in California with an interest in LHON. This call takes place every other month on the third Tuesday of the month, at 6pm Pacific. Host Bob Banks facilitates this call. Consider joining the call to share your experiences with others in a similar situation. Reach out to Bob […]
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Dads of LHON-Affected “Kids of All Ages”
Dads of LHON-Affected “Kids of All Ages”
The monthly call for Dads of LHON-Affected "Kids of All Ages" takes place on the third Wednesday of every month at 8:00pm EST/5:00pm PST. If you're a dad of someone affected by LHON, consider joining the call and sharing your experiences with others in a similar situation. Tony Wright and Jim Tolve host this open-discussion format […]
Milwaukee Virtual Support Meeting 2021
Milwaukee Virtual Support Meeting 2021
"Virtual" Support Meeting Milwaukee Join us for a VIRTUAL SUPPORT MEETING! You are not alone. Join us to share coping tips and connect with others. We want to meet YOU! The 3rd Wednesday of every month 6:30 - 8:30pm CT Register in advance for this meeting: *** Please note that we are using a new […]
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LHON MS Zoom Event
LHON MS Zoom Event
LHON MS Zoom Event This Zoom event is for those in the LHON community who also live with MS. Our goal is to develop connections among those who have both LHON and MS. This call takes place quarterly on select dates. Reach out to Lissa Poincenot at lhonpoince@aol.com with any questions. Thursday, May 20, 2021 […]
Western New York Virtual Support Meeting 2021
Western New York Virtual Support Meeting 2021
"Virtual" Support Meeting- Western New York Join us for a VIRTUAL MEETING! You are not alone. Join us to share coping tips and connect with others. The third Thursday of each month 6:00pm - 7:00pm Register in advance for this meeting. *** Please note that we are using a new link to register for this […]
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Teen and Young Adult Virtual Happy Hour Ages 16-35
Teen and Young Adult Virtual Happy Hour Ages 16-35
UMDF Teen/Young Adult "Virtual Happy Hour" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Happy Hour! Join us for this alcohol-free "Virtual Happy Hour"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! […]
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LHON Sisterhood
LHON Sisterhood
Are you a woman who carries an LHON mutation? Whether you're affected by LHON symptoms or not, you're invited to be part of the LHON Sisterhood! This community is intended to provide a safe space for all women who carry an LHON mutation to discuss topics specific to navigating life as a woman impacted by […]
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Michigan Virtual Support Meeting 2021
Michigan Virtual Support Meeting 2021
Michigan "Virtual" Support Meeting Join us for a VIRTUAL Support Meeting! You are not alone. Join us to share coping tips and connect with others. We meet on the 4th Thursday of each month. 7:00 - 8:00pm ET You must register in advance for this meeting. Register HERE After registering, you will receive a confirmation […]
1 event,
Teen and Young Adult Virtual Happy Hour Ages 16-35
Teen and Young Adult Virtual Happy Hour Ages 16-35
UMDF Teen/Young Adult "Virtual Happy Hour" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Happy Hour! Join us for this alcohol-free "Virtual Happy Hour"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! […]
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1 event,
LHON Live! Monthly Call
LHON Live! Monthly Call
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: Jessica Loomer and Andy Marks Reach out to Jessica Loomer at jessica.loomer@gmail.com or Andy Marks at marks.andy.c@gmail.com with […]
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2 events,
Teen and Young Adult Virtual Happy Hour Ages 16-35
Teen and Young Adult Virtual Happy Hour Ages 16-35
UMDF Teen/Young Adult "Virtual Happy Hour" Teens and Young Adults Age 16-35 Every Friday! 8:00pm ET Join us EVERY Friday for a VIRTUAL Happy Hour! Join us for this alcohol-free "Virtual Happy Hour"! It is tough being stuck at home, but you are not alone. Let's get together, share coping tips and have some FUN! […]