UMDF

Northeast PA Support Meeting
2025-03-15 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

Teen and Young Adult Virtual Meet-Up Ages 16-35
2025-03-14 20:00 - 21:00, 2025-03-07 20:00 - 21:00, 2025-02-28 20:00 - 21:00, 2025-02-21 20:00 - 21:00, 2025-02-14 20:00 - 21:00, 2025-02-07 20:00 - 21:00, 2025-01-31 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

Support Group for All
2025-03-12 12:00 - 13:00, 2025-02-12 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.

Frontiers in Mitochondrial Medicine
2025-03-12 08:00 - 17:00 (America/New_York)
Frontiers in Mitochondrial Medicine
​​​​​March 12, 2025 — Icahn School of Medicine at Mount Sinai
Click Here for Agenda and to Register
The Department of Genetics and Genomic Sciences at the Icahn School of Medicine at Mount Sinai invites mitochondrial disease families to join them on March 12 – in-person or remotely — for Frontiers in Mitochondrial Medicine, a symposium showcasing cutting-edge research and breakthroughs in mitochondrial biology and therapeutics. Featuring an illustrious lineup of leading experts and a keynote lecture by Dr. Douglas Wallace, this event will highlight emerging insights and innovative approaches transforming the field.
Speakers include:
Douglas Wallace, PhD, Children’s Hospital of Philadelphia – Keynote
Jerry Chipuk, PhD, Icahn School of Medicine
Stephen Ekker, PhD, The University of Texas at Austin
Ibrahim Elsharkawi, MD, Icahn School of Medicine
Jaya Ganesh, MD, Icahn School of Medicine
Rebecca Ganetzky, MD, Children’s Hospital of Philadelphia
Anna Monzel, PhD, Columbia University
Ethan Perlstein, PhD, Perlara
Graeme Preston, PhD, Icahn School of Medicine
Noa Sher, PhD, Minovia Therapeutics
Caroline Trumpff, PhD, Columbia University
REGISTER HERE

UMDF Ask the Mito Doc Webcast Series – Clinical Trial Readiness and UMDF Mito Med Clinical Research Pavilion Update
2025-03-10 12:00 - 13:00 (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 March 10, 2025
at 9:00am Pacific/10:00am Mountain/11:00am Central/12:00pm Eastern
Click Here to Register
Agenda

Clinical Trial Readiness and UMDF Mito Med Clinical Research Pavilion Update
We are dedicating March’s UMDF Bench-to-Bedside and the UMDF Ask the Mito Doc Webcasts to Clinical Trial Readiness. Instead of two separate webcasts, we will combine the clinician Bench-to-Bedside with the patient/family Ask the Mito Doc into ONE webcast. The combined webcast will take place from 12:00-1:00PM ET on March 10th. The audience will be a mix of patients, researchers, clinicians and industry.

Tentative Agenda:
UMDF Mito Medicine Conference Clinical Research Pavilion (CRP) 2024 readouts and preview of what to expect in the CRP in St. Louis in June 2025

Dr. Zuela Zolkipli Cunningham and the CHOP Team
Dr. Tony Adams
Dr. Damiano Zanotto
Dr. Philip Yeske
Nicole Wilson

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

Adult Virtual Support Meeting
2025-03-06 20:00 - 21:00, 2025-02-06 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

LHON Live! Monthly Call
2025-03-05 20:00 - 21:00, 2025-02-07 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

Volunteer Interest Meeting
2025-03-05 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 - Teens
2025-03-04 20:00 - 21:00 (America/New_York)
This call is ONLY for teens (under 18) who are affected with LHON vision loss. Consider joining the call to share your experiences with others in a similar situation.
Please contact Molly Garrone at mollyeknox@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:
+16699006833,,95371313871#
+16468769923,,95371313871#

California Virtual Support Group Meeting
2025-03-03 10:00 - 11:00, 2025-02-03 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

California Virtual Support Group Meeting
2025-03-03 10:00 - 11:00, 2025-02-03 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

Rare Disease Day
2025-02-28
Visit rarediseaseday.org and share!

Central Region Virtual Support Meeting
2025-02-27 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

LHON Assistive Technology
2025-02-25 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.

More details
More details
Copy to my calendar
Copy to my calendar

Mindfulness with Mary Series (monthly)
2025-02-25 12:00 - 13:30, 2025-01-28 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

Spouses of LHON - Affected Individuals
2025-02-18 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

UMDF Ask the Mito Doc Webcast Series – Comprehensive Care in Kearns-Sayre and Pearson Syndromes: Diagnosis, Symptom Management, and Support Strategies
2025-02-12 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 February 12, 2025
at 4:00pm Pacific/5:00pm Mountain/6:00pm Central/7:00pm Eastern
Click here to Register
Agenda

Comprehensive Care in Kearns-Sayre and Pearson Syndromes:
Diagnosis, Symptom Management, and Support Strategies
Speakers:

Rebecca Ganetzky, MD, Children’s Hospital of Philadelphia
Sumit Parikh MD, The Cleveland Clinic

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@5mr.c80.myftpupload.com.
Click Here to Submit Your Question!
We hope you can join us on February 12, 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@5mr.c80.myftpupload.com 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
Edith L. Trees Charitable Trust

LHON MS Zoom Event
2025-02-01 12:00 - 13:00 (America/Los_Angeles)
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.

There is also a Facebook group: LHON-MS group

Reach out to Lissa Poincenot at lhonpoince@aol.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:
+16699006833,,95371313871#
+16468769923,,95371313871#
