Spouses of LHON - Affected Individuals
2025-08-19 20:00 - 21:30 (America/New_York)
Are you the spouse (or similar) of someone affected by LHON? Would you like to network with others in a similar situation? Consider joining our event for Spouses of LHON-Affected Individuals Zoom event. This Zoom event is a great opportunity to get to know each other and share LHON-related experiences.
Join Details:
One option is to use Internet Audio to call at no charge at:
https://umdf.zoom.us/j/95371313871
Meeting ID: 953 7131 3871
Or if your phone plan includes Unlimited Minutes, then here are Toll Charge numbers to one-click call:
+13017158592,,95371313871# US
+13126266799,,95371313871# US
Canada: +16475580588,,95371313871#
Australia: +61280152088,,95371313871#
UK: +442034815240,,95371313871#

For callers in other countries, find your local number here:
https://zoom.us/u/aYbvpoNU9
Meeting ID: 953 7131 3871

Teen and Young Adult Virtual Meet-Up Ages 16-35
2025-08-22 20:00 - 21:00, 2025-08-29 20:00 - 21:00, 2025-09-05 20:00 - 21:00, 2025-09-12 20:00 - 21:00, 2025-09-19 20:00 - 21:00, 2025-09-26 20:00 - 21:00, 2025-10-03 20:00 - 21:00 (America/New_York)
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 Dellinger and Devin Shuman will lead these calls.
See you on Friday!
Register in advance for this meeting:
If you registered last week, you can use the same information to join every week!
Click Here to Register Now
After registering, you will receive a confirmation email containing information about joining the meeting.
If you have questions, please email Margaret Moore at margaret.moore@umdf.org

LHON Assistive Technology
2025-08-26 20:00 - 21:30 (America/New_York)
This Zoom event is for anyone interested in discussing LHON & Assistive Technology. The event is led by Sara Nappi. Sara is affected by LHON, and she is an Assistive Technology instructor.
There is also a Facebook group: LHON Assistive Technology

To join the Zoom event, use the link below:
https://umdf.zoom.us/j/95371313871

Meeting ID: 953 7131 3871

Or join by phone with one tap mobile:
+16699006833,,95371313871#
+16468769923,,95371313871#

Canada: +16475580588,,95371313871#
Australia: +61280152088,,95371313871#
UK: +442034815240,,95371313871#
For callers in other countries, find your local number here:
https://zoom.us/u/aYbvpoNU9
Meeting ID: 953 7131 3871
Please direct message Sara Nappi with any questions, concerns or topic suggestions.

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Central Region Virtual Support Meeting
2025-08-28 19:00 - 20:00, 2025-09-25 19:00 - 20:00 (America/Chicago)
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.
Fourth Thursday of each month • 7:00pm – 8:00pm Central
Learn more & register here.
Registration is required, and you will receive a confirmation email with information to join the meeting. If you have any questions, contact Margaret Moore at margaret.moore@umdf.org or 412-744-1061 Ext 105.
Visit the UMDF Event Calendar for all updates and upcoming events here.
Special Thanks to our Sponsors
Edith L. Trees Charitable Trust • Jack Edwards Family Impact Fund

California Virtual Support Group Meeting
2025-09-01 10:00 - 11:00, 2025-10-06 10:00 - 11:00 (America/New_York)
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.
Monday, March 7 • 10:00pm – 11:00am Pacific
Learn more & register here.
Registration is required, and you will receive a confirmation email with information to join the meeting. If you have any questions, contact Margaret Moore at margaret.moore@5mr.c80.myftpupload.com or 412-354-1553.
Visit the UMDF Event Calendar for all updates and upcoming events here.
Special Thanks to our Sponsors
Edith L. Trees Charitable Trust • Astellas • Jack Edwards Family Impact Fund

Volunteer Interest Meeting
2025-09-03 12:00 - 13:00 (America/New_York)
Learn about all the ways that YOU can Be the Energy for the #mito community. Wherever your talents or interests lie — whether they be in support, advocacy, or fundraising toward treatments — you could be a change maker for patients and families impacted by #mitochondrialdisease. Register here: https://umdf.secure.nonprofitsoapbox.com/vol

LHON Live! Monthly Call
2025-09-03 20:00 - 21:00, 2025-10-01 20:00 - 21:00 (America/New_York)
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 Jessica Loomer and Andy Marks facilitate this call.
Recordings from prior LHON Live! calls are located at this link: https://www.umdf.org/types/lhon/
Reach out to Jessica Loomer at jessica.loomer@gmail.com or Andy Marks at marks.andy.c@gmail.com with any questions.
Join Details:
One option is to use Internet Audio to call at no charge at: https://umdf.zoom.us/j/95371313871
Meeting ID: 953 7131 3871
Or if your phone plan includes Unlimited Minutes, then here are Toll Charge numbers to one-click call:
+13017158592,,95371313871# US
+13126266799,,95371313871# US
Canada: +16475580588,,95371313871#
Australia: +61280152088,,95371313871#
UK: +442034815240,,95371313871#
For callers in other countries, find your local number here: https://zoom.us/u/aYbvpoNU9
Meeting ID: 953 7131 3871
Click Here for Previous LHON Live! Recordings

Adult Virtual Support Meeting
2025-09-04 20:00 - 21:00, 2025-10-02 20:00 - 21:00 (America/New_York)
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 the meeting.
For questions, please email Margaret Moore at: margaret.moore@5mr.c80.myftpupload.com
THANK YOU TO OUR SPONSORS
Edith L. Trees Charitable Trust
Astellas
Jack Edwards Family Impact Fund

Mitochondrial Replacement Therapy Bench-to-Bedside Seminar
2025-09-05 10:00 - 11:30 (America/New_York) | https://pi.umdf.org/e/346741/ster-WN-o3vM4-f-RA-rKnCsUGizfQ/95v178/1092070774/h/-e2rUlMP2zMOXO2mEVk1FF94RTzzTzT_7wV7h0nrp6E
OPEN TO ALL
UMDF Bench-to-Bedside Seminar
Mitochondrial Replacement Therapy (MRT): Shared Experiences from the UK & Australia and Implications in the US
​​​​​​
Friday, Sept. 5 at 10:00 am ET
Last month, researchers in the United Kingdom published two papers sharing promising results from eight births utilizing mitochondrial replacement therapy, a fertility technique that helps prevent the transmission of mitochondrial disease to future generations. The technique involves transferring the nuclear DNA from a mother’s fertilized egg into a fertilized donor egg with healthy mitochondria, resulting in a child who is genetically related to both parents but with a much lower risk of inheriting mitochondrial disease. The technique is currently legal to use in clinical research in the UK and Australia, but not in the United States.
All — patients, families, clinicians, and researchers — are welcome to join us for a special MRT-focused Bench-to-Bedside on September 5 at 10am ET featuring non-profit leaders and clinicians who have personal experience with the science and political components of MRT, including: ​​​​​
Moderator:
Philip E. Yeske, PhD, UMDF Science & Alliance Officer
Speakers/Panelists:
Sean Murray, Mito Foundation CEO
Clare Stuart, Mito Foundation Policy and Advocacy Manager
Clair Wright, Lily Foundation
Michio Hirano, MD, Columbia University Medical Center
Dieter Egli, PhD, Columbia Stem Cell Initiative
Robert McFarland, MA MBBS PhD MRCP MRCPH, Director of the NHS Highly Specialised Service for Rare Mitochondrial Disorders
Mary Herbert, PhD, Monash Biomedicine Discovery Institute
Please register using the below link. Questions can be submitted before the seminar here.

TK2d Tuesday
2025-09-09
Join UMDF as we mark TK2d Tuesday. Thymidine kinase 2 deficiency (TK2d) is a rare genetic mitochondrial disease caused by inherited mutations in TK2, a nuclear gene responsible for making a mitochondrial enzyme called thymidine kinase 2. These mutations reduce the amount and quality of mitochondrial DNAs inside cells.
Learn more about TK2d at umdf.org/tk2d.
TK2d is supported by UCB.

Support Group for All
2025-09-10 12:00 - 13:00 (America/New_York)
When: The Second Wednesday of each month at 12:00 PM Eastern Time (US and Canada)
Register in advance for this meeting:
https://umdf.zoom.us/meeting/register/tZcpcumsrTsiH9w1_pPmjbc-KqRCAIrmQCKt
After registering, you will receive a confirmation email containing information about joining the meeting.

World Mitochondrial Disease Week 2025
2025-09-15 - 2025-09-21

Parent and Caregiver Virtual Support Meeting
2025-09-15 20:00 - 21:00 (America/New_York)
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 will receive a confirmation email containing information about joining the meeting.
For questions, please email Margaret Moore at: margaret.moore@umdf.org
THANK YOU TO OUR SPONSORS
Edith L. Trees Charitable Trust
Astellas
Jack Edwards Family Impact Fund

UMDF Ask the Mito Doc Webcast Series – Seizures in Patients with Mito
2025-09-16 19:00 - 20:00 (America/New_York)
The United Mitochondrial Disease Foundation is pleased to offer the Ask the Mito Doc Webcast Series on a monthly basis to keep our patients and families connected to the mitochondrial medical community. Each month, we will highlight a specific topic with a short presentation and allow 15-20 minutes for question and answer time with the clinicians and guest speakers.

Join us on September 16, 2025
at 4:00pm Pacific/5:00pm Mountain/6:00pm Central/7:00pm Eastern
Click Here to Register
Agenda

Seizure Management in Patients with Mitochondrial Disease
Speakers:

Russell Saneto, DO, PhD, Seattle Children’s Hospital, Seattle, Washington

We invite you to submit your questions for the Ask the Mito Doc webcast in advance. We will take as many questions as possible before, during and after the webinar. Question and Answer Protocol – Most questions pertinent to the monthly topic are typically addressed during the presentation(s). Please note that not all questions can be answered through this forum. If you submit a question and do not receive a response, please do not hesitate to contact us at margaret.moore@umdf.org.
Click Here to Submit Your Question!
We hope you can join us September 16, 2025. Registration is required. After registering, you will receive a confirmation email with Zoom credentials.
If you are new to using ZOOM, we suggest that you log in early on your computer or the device you plan to use. Feel free to log in to the meeting link today. It is so important that you do this in advance as we may not be able to assist you once the webcast begins. If you have any questions, contact Margaret Moore at margaret.moore@umdf.org or 412-744-1061, ext 105.
We are committed to providing needed support for our patient community.
Call our support line at 1-888-900-MITO to speak with a member of our patient services team.
Always remember, we are here to help you and your family through your journey!
Special Thanks to

Community Webinar with Saol Therapeutics to Discuss SL1009 (DCA)
2025-09-18 15:00 - 16:00 (America/New_York) | https://umdf.org/event/community-webinar-with-saol-therapeutics-to-discuss-sl1009-dca/
Register Here Community Webinar with Saol Therapeutics to Discuss SL1009 (DCA)
Thursday, September 18, 3:00 PM – 4:00 PM EDT
Last week, Saol Therapeutics shared the FDA has issued a Complete Response Letter (CRL) regarding the company’s application for dichloroacetate (DCA) to treat Pyruvate Dehydrogenase Complex Deficiency (PDCD). In this CRL, the FDA declined to approve DCA at this time and requested that Saol initiate a new clinical trial to address remaining questions. Here you will find a community statement from Saol.
We are deeply disappointed by this outcome and mindful of what it means for families awaiting options. Our collective organizations remain committed to advocating for timely, patient-centered next steps, engaging with regulators, and keeping you informed as more details emerge. You can read our full statement here.
As part of that commitment, you’re invited to a special webinar on Thursday, September 18, at 3pm EDT, where you can submit questions and hear directly from Saol leadership regarding DCA, the clinical trial, and the path forward with the FDA. Any questions you would like to ask can be submitted on the registration page.
Host:
Frances Pimentel, Hope for PDCD
Featured speakers include:
Dave Penake, CEO, Saol Therapeutics
Kyle Ashton, PhD, Head of Medical Affairs, Saol Therapeutics
Sharon Hamm, Pharm.D., RPH, Chief Development Officer, Saol Therapeutics
Brian Nappi, Chief Strategy Officer, Saol Therapeutics

LHON - New York, New Jersey, Pennsylvania Connect
2025-09-18 19:00 - 20:00 (America/New_York)
Please Join Us!
This call for those living in New York, New Jersey, or Pennsylvania with an interest in LHON takes place quarterly on the third Thursday of the month at 7:00pm EST. Hosts Jim and Mary Tolve facilitate this call. Consider joining the call and sharing your experiences with others in a similar situation.
The following Facebook Groups are also available:

New York Group – Click here
New Jersey Group – Click here
Pennsylvania Group – Click here

Reach out to Jim Tolve at jetragnar@gmail.com with any questions.
Join Details:
One option is to use Internet Audio to call at no charge at:
https://umdf.zoom.us/j/95371313871
Meeting ID: 953 7131 3871
Or if your phone plan includes Unlimited Minutes, then here are Toll Charge numbers to one-click call:
+13017158592,,95371313871# US
+13126266799,,95371313871# US

LHON Awareness Day
2025-09-19
Join UMDF as we mark Leber hereditary optic neuropathy day!
Leber hereditary optic neuropathy (LHON) is a rare inherited mitochondrial disorder. Its primary symptom is sudden, painless loss of central vision. The typical onset pattern is for one eye to become affected, then the other eye to begin losing vision within a few weeks or months; though in rare cases, the interval between eyes can be years or decades. Onset begins with a small scotoma (blurry spot) in or around the center of vision that rapidly gets larger over about eight months, then stabilizes. The person affected experiences profound vision loss and legal blindness (visual acuity worse than 20/200). There is a wide range of outcomes in terms of how much peripheral vision remains, but most individuals affected by LHON retain some peripheral vision and never become totally blind.

Northeast PA Support Meeting
2025-09-20 10:00 - 12:00 (America/New_York)
Support Meeting- Northeast PA
Third Saturday of each Month- In-Person
10:00pm – 12:00pm 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!
1:00pm – 3:00pm
For questions, please contact Grace Robinson or Janelle Frank, the Support Group Leaders:
gracerobinson13@gmail.com or janelle.frank13@gmail.com

Mindfulness with Mary Series (monthly)
2025-09-23 12:00 - 13:30 (America/New_York)
Please join us for a monthly Mindfulness series with UMDF Support Ambassador, Mary Canton. We will host these sessions every fourth Tuesday from 12:00pm -1:30pm ET.
You can register HERE

California Virtual Support Group Meeting
2025-10-06 10:00 - 11:00 (America/Los_Angeles)
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 & register here.
Registration is required, and you will receive a confirmation email with information to join the meeting. If you have any questions, contact Margaret Moore at margaret.moore@5mr.c80.myftpupload.com or 412-354-1553.
Visit the UMDF Event Calendar for all updates and upcoming events here.
Special Thanks to our Sponsors
Edith L. Trees Charitable Trust
