Energy in Action by MitoAction

  ENERGY IN ACTION - EPISODE 035 The MitoSantas Program   We're in the Christmas spirit at MitoAction. Jeannie Freeman and Stephanie Tomlinson discuss the popular MitoSantas program. Tune in to learn more about how you can support the program, how to become an elf or a recipient.    EPISODE HIGHLIGHTS   What is the history of the MitoSantas program? MitoSantas started in western New York in 2009 w...

  ENERGY IN ACTION - EPISODE 034 Meet The Mito Girl   Daniela Gallo shares her journey of living with mitochondrial disease while balancing motherhood, working, spreading awareness and caring for herself.   EPISODE HIGHLIGHTS   Can you share your diagnosis? I have Kearns Sayre Syndrome (KSS), which I was diagnosed with four years ago, at the age of 31. I started showing symptoms when I was 12 year...

  PARENTS AS RARE - EPISODE 033 Emma & Spencer - The Heart of Parents As Rare As a dad with a rare disease, I often think about the ways my children have been impacted. My children, 11 year old Emma and 5 year old Spencer, share their thoughts and feelings on this inaugural episode.  EPISODE HIGHLIGHTS What do you remember about my diagnosis? I knew it was a muscle disease and that's all anyon...

ENERGY IN ACTION - EPISODE 032 RNE Annual Conference Rare New England is a nonprofit in Massachusetts who serves the rare disease community in New England. Julie Gortz, Founder and Volunteer President of Rare New England, is sharing about the organization, how it started and about their upcoming conference on October 23rd. EPISODE HIGHLIGHTS What is your annual conference about? While there are a...

  ENERGY IN ACTION - EPISODE 031 Making Mito Wishes Come True - A Partnership with Give Kids The World Village   MitoAction and Give Kids The World have partnered to provide kids in the community an amazing experience. Amy from Give Kids the World joins me to share more about the organization and program offerings for wish families.   EPISODE HIGHLIGHTS   What is the history of Give Kids The World...

TRAILER - PARENTS AS RARE I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis of a progressive mitochondrial disease with no treatment or cures, the isolation was almost as excruciating as the symptoms. I felt alone in so many ways, but in particular as a parent. I knew I couldn't be the only person with a rare...

  ENERGY IN ACTION - EPISODE 029 AllStripes & Cyclerion - Community Collaboration to Push Clinical Trials Forward Richard Elles, Director of Patient Advocacy & Industry Engagement with AllStripes and Chad Glasser, Director of Clinical Research with Cyclerion Therapeutics, join us to discuss a pivotal clinical trial that Cyclerion Therapeutics has and the collaboration we have with AllStrip...

Meet Kasey Woleben and Sophia Zilber from the Cure Mito Foundation !   The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives.  Each of us has a young child diagnosed with SURF1 Leigh syndrome.  Each of us has been told by doctors that there is no treatment, no cure, and no hope.  And each of us has refused to accept this as a final answer...

Meet Another Helping founder and daughter of the "Dadvocate," Emma Johnson and learn how she combined 2 of her passions to help others who are affected by mitochondrial disease like her dad.

Meet MitoAction's CEO, Kira Mann and Care3 's CEO, David Williams to learn about MitoAction Mobile, our HIPPA compliant, comprehensive care planning and tracking platform for patients, caregivers and healthcare professionals.

Meet the team at Rare Patient Voice and learn how to make your voice heard!

Join Energy in Action host, Stephanie Tomlinson as she interviews Emil Kakkis and Jessica Riviere from  Ultragenyx Pharmaceutical . On this podcast, Ultragenyx will share how the company entered into LC-FAOD research, its research efforts, and how LC-FAOD patient voices and community engagement are central to the planning, implementation, and advancement of Ultragenyx research and programs. Ultrag...

Listen it to meet MitoCanada's Chief Executive Officer Kate Murray and Chief Development Officer Catherine Mulvale.

Meet April Arguin!

Meet Nichole Goble and learn more about the Caregivers Action Network!

Meet Kari and her daughter Hailee!

Tune in to learn more about The Oley Foundation!

Tune in to meet Lukas from Probably Genetic and learn how you can find out if their DNA test is right for you!

Meet Annie Leeds!

Meet Mark Jensen and Dagmar Amtmann and learn about their research study with Zogenix!

Meet Dan & Rebecca - the co-founders of Hear Your Song!

Meet Dr. Matthew Klein from PTC Therapeutics and learn about navigating clinical trials and COVID-19

Learn about service dogs with Can Do Canines and hear about their upcoming event, The Fetching Ball.

Meet Rare Disease Dad, Adam Johnson!

Meet mito warrior and mom, Amanda Butler and her 2 children Katy & Layton!