Community Impact

COVER STORY

A DAY IN THE LIFE

No two days are the same for Margaret Moore, UMDF’s Support and Education Associate.

No two days are the same for Margaret Moore, UMDF’s Support and Education Associate.

For many, Margaret is the first voice they hear when they learn they or a loved one has mitochondrial disease. In her calm and reassuring way, Margaret joins them on their journey and leads them to vital information and resources provided by UMDF. Margaret’s personal mission is to serve as a navigator for many patient families. Her days begin early and often end late in the evening. We want to share with you a “Day in the Life” of UMDF Support and Education Associate, Margaret Moore., Margaret Moore.

7:16am
7:16am

Margaret begins her typical day with a cup of tea followed by a quick walk with Daniel, her Black Lab. After they have both enjoyed some fresh air, Margaret heads home to get her day underway.

8:31am
8:31am

Margaret usually begins her workday with a quick scan of the UMDF Facebook Support Group to review questions or requests that have been made. More than 10,000 patient families gather on this page to interact with each other or to get support. Margaret also reviews and respond to emails and directs patient inquiries to the various educational and support resources provided by UMDF. Afterward, Margaret starts planning her day, determining the best resources available by gathering information that she will share to help patient families.

9:17am
9:17am

A newly diagnosed patient family member calls Margaret.  An anxious voice on the other end of the phone asks Margaret, “Where do I start?” Thanks to UMDF’s innovative resources like Find a Doctor or Mito U, Margaret is able to quickly provide immediate information and helpful resources.

10:01am
10:01am

Making good on her promise to be with her new patient family on their journey with mitochondrial disease, Margaret prepares an email that contains valuable links to initial information.  She promises to follow up in a few weeks when she will mail additional resources.  Margaret also makes plans to check back by phone to make sure patient families know they are not alone on this journey and to provide valuable support.

11:32am
11:32am

Daniel needs a walk.  It’s also an opportunity for Margaret to visit the post office to mail all of the information packets and resources to the patient families expecting them. Daniel enjoys walking in the sunshine and around the fountain at the post office.

1:15pm
1:15pm

After a quick lunch, Margaret puts the finishing touches on a planned virtual teen and young adult meeting scheduled later in the week.  Each month, hundred of teens and young adults gather to share their stories.  Later in the afternoon, Margaret will prepare for an upcoming UMDF “Ask The Mito Doc” Webcast.

These monthly webcasts are critical in providing information from experts in mitochondrial medicine to patients and caregivers.   Margaret and Kara Strittmatter meet to plan the next webcast and arrange for the physicians who will participate.

2:47pm
2:47pm

Margaret oversees the UMDF Support Ambassador Program.  In that role, she connects patient families to a network of nearly 100 Ambassadors, located around the world. UMDF Support Ambassadors volunteer support patients with a listening ear,  offer support and provide additional education.  Support Ambassadors check in regularly with Margaret for new information and updates.

 

4:15pm
4:15pm

When UMDF learns that one of our mito angels has passed away, Margaret helps to ensure that the family knows we are thinking about them and by providing grief support in their time of need and directing them to specialized support.

UMDF Grief Support on Facebook >>

8:01pm
8:01pm

In 2020, UMDF hosted more than 130 virtual support meetings for patient families.  Margaret moderates many of these.  Before she wraps up her day, Margaret makes notes and outlines how she will follow up with those who need a question answered or additional support.


Helping patient families and caregivers on a journey with mitochondrial disease is our priority. Whether its connecting to one of nearly 100 support ambassadors, virtually gatherings at one of UMDF’s monthly support group meetings, or providing answers through our ‘Ask the Mito Doc’ or Mito U programs, your gift allows UMDF to continue our mission of support and education.