UMDF

Northeast PA Support Meeting
2024-09-21 10:00 - 12:00, 2024-08-17 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

Energy for Life Walk - Columbus
2024-09-21 09:00 - 11:30 (America/New_York) | Wolfe Park Shelter House, 105 Park Drive, Columbus, Ohio, 43209
ENERGY FOR LIFE WALK COLUMBUS
SEPTEMBER 21, 2024

LOCATION
Wolfe Park Shelterhouse
SCHEDULE
Site Opens: 9:00 AM
Opening Ceremony: 9:45 AM
CONTACT
Angela Sommer – 412-744-1066

Energy for Life Walk - Southern Wisconsin
2024-09-21 09:00 - 11:30 (America/New_York) | Fox Brook Park, 2925 N Barker Rd, Brookfield, WI, 53045
ENERGY FOR LIFE WALK SO. WISCONSIN
SEPTEMBER 21, 2024

LOCATION
Fox Brook Park
SCHEDULE
Site Opens: 9:00 AM
Opening Ceremony: 10:00 AM
CONTACT
Monika Hancock – 412-225-9066

Energy for Life Walk - Detroit
2024-09-21 09:00 - 11:30 (America/New_York) | Rotary Park, Six Mile Road & Hubbard Street, Livonia, MI, 48152, United States
ENERGY FOR LIFE WALK DETROIT
SEPTEMBER 21, 2024

LOCATION
Rotary Park – Pavilions 3 & 4
SCHEDULE
Site Opens: 9:00 AM
Opening Ceremony: 10:00 AM
CONTACT
Monika Hancock – 412-225-9066

Teen and Young Adult Virtual Meet-Up Ages 16-35
2024-09-20 20:00 - 21:00, 2024-09-13 20:00 - 21:00, 2024-09-06 20:00 - 21:00, 2024-08-30 20:00 - 21:00, 2024-08-23 20:00 - 21:00, 2024-08-16 20:00 - 21:00, 2024-08-09 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@5mr.c80.myftpupload.com

LHON Awareness Day
2024-09-19
Leber hereditary optic neuropathy (LHON) is a rare inherited mitochondrial disorder. Its primary symptom is sudden, painless loss of central vision. Learn more at https://umdf.org/LHON.

Leigh Syndrome Awareness Day
2024-09-17

World Mitochondrial Disease Awareness Week
2024-09-16 - 2024-09-22
Energize the Fight – World Mitochondrial Disease Week 2024
We’re excited to unite with other mitochondrial disease-focused patient advocacy groups across the globe to spread awareness on World Mitochondrial Disease Week, September 16-22, 2024! Together, we can promote understanding and recognition with the hope that increased awareness, attention, and funds will move the needle toward effective treatments and cures for the entire mito community.
TK2d Tuesday – September 10
UMDF Virtual Capitol Hill Day – September 17
LHON Awareness Day – September 19
FDA Listening Meeting on Genetic Therapy Treatments for Rare Diseases – September 20, 11am-4:30pm ET
Global Light Up for Mito – September 21
More info on global events and initiatives: mitochondrialdiseaseweek.org

Energize the Fight – World Mitochondrial Disease Week 2024

Energy for Life Walk - National (Virtual)
2024-09-14 09:00 - 2024-09-21 11:30 (America/New_York)
ENERGY FOR LIFE WALK NATIONAL
SEPTEMBER 14 – 21, 2024

LOCATION
A Venue of Your Choice!
SCHEDULE
A Start of Your Choice!
CONTACT
Monika Hancock – 412-225-9066
Angela Sommer – 412-539-9450

Energy for Life Walk - Kansas City
2024-09-14 09:00 - 11:30 (America/New_York) | Lowenstein Park, 1901 NW Lowenstein Dr, Lee's Summit, MO, 64081
ENERGY FOR LIFE WALK KANSAS CITY
SEPTEMBER 14, 2024

LOCATION
Lowenstein Park
1901 NW Lowenstein Dr
Lee’s Summit, MO 64081
SCHEDULE
Site Opens: 9:00 AM
Opening Ceremony: 10:00 AM
CONTACT
Deidra Atchley – 913-208-8725
Monika Hancock- 412-225-9066

UMDF Ask the Mito Doc Webcast Series – Understanding Genetic Testing
2024-09-12 19:30 - 20:30 (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 12, 2024
at 4:30pm Pacific/5:30pm Mountain/6:30pm Central/7:30pm Eastern
Click Here to Register
Agenda

Understanding Genetic Testing
Speakers:
Austin Larson, MD, Children’s Hospital of Colorado, Aurora, CO
Eva Morava-Kozicz, MD, PhD, Icahn School of Medicine at Mount Sinai, New York, NY
Ibrahim Elsharkawi, MD, Icahn School of Medicine at Mount Sinai, New York, NY

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 September 12, 2024. 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

TK2d Tuesday
2024-09-10
Thymidine kinase 2 deficiency (TK2d) is a rare mitochondrial disease that impacts people around the world. TK2d Tuesday is the second Tuesday of September and is meant to celebrate the TK2d community and its resilience. Learn more at umdf.org/tk2d.

Energy for Life Walk - Chicago
2024-09-08 09:00 - 11:30 (America/New_York) | Katherine Legge Memorial Park, 5901 County Line Road, Hinsdale, IL, 60521, United States
ENERGY FOR LIFE WALK CHICAGO

LOCATION
Katherine Legge Memorial Park
SCHEDULE
Site Opens: 9:00 AM
Opening Ceremony: 10:00 AM
CONTACT
Angela Sommer – 412-744-1066

LHON Live! Monthly Call
2024-09-07 20:00 - 21:00, 2024-08-07 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

Energy for Life Walk - Delaware Valley
2024-09-07 10:30 - 13:30 (America/New_York) | Pennington Park, 801 Creek Road, Delanco, New Jersey, 08075
ENERGY FOR LIFE WALK DELAWARE VALLEY

LOCATION
Pennington Park
SCHEDULE
Site Opens: 10:30 AM
Opening Ceremony: 11:30 AM
CONTACT
Monika Hancock – 412-225-9066

Energy for Life Walk - Indianapolis
2024-09-07 10:00 - 13:00 (America/New_York) | Coxhall Gardens Children’s Pavilion, 11677 Towne Road, Carmel, IN, 46032
ENERGY FOR LIFE WALK INDIANAPOLIS

LOCATION
Coxhall Gardens – Children’s Pavilion
SCHEDULE
Site Opens: 10:00 AM
Opening Ceremony: 11:00 AM
CONTACT
Monika Hancock – 412-225-9066

Adult Virtual Support Meeting
2024-09-05 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

California Virtual Support Group Meeting
2024-09-02 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
2024-09-02 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

TK2d Virtual Support Meeting August 2024
2024-08-27 12:00 - 13:00 (America/New_York)
TK2d “Virtual” Support Meeting
Let’s get ready for TK2d Tuesday!
Join us for a VIRTUAL MEETING!
Tuesday, August 27 ,2024
12:00pm-1:00pm 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
Special thanks to our Sponsors
Edith L Trees Charitable Trust
UCB

Central Region Virtual Support Meeting
2024-08-22 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 - Southwest x Pacific Northwest Connect
2024-08-20 20:00 - 21:30 (America/Los_Angeles)
LHON – Southwest x Pacific Northwest Connect
This Zoom event is a great opportunity to connect and discuss resources of interest to the Southwest LHON (previously California) community! Contact Bob Banks with any questions at rwbanks@hotmail.com.
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#
