Energy in Action by MitoAction
155 episodes - English - Latest episode: 10 days ago - ★★★★★ - 4 ratingsEnergy In Action by MitoAction will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies.
If you would like to be a guest or suggest a topic, please email us at [email protected].
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Episodes
Patient Led Trials
December 08, 2021 16:00 - 39 minutes - 53.8 MBENERGY IN ACTION - EPISODE 038 Patient Led Trials Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease patients. EPISODE HIGHLIGHTS How did you become a rare disease advocate? My advocacy started when my three year old was diagnosed with a rare disorder in 1990. My focus was on our family, but I also began looking to see what can be done medically and I was also pretty quickly introduced to the world of clinical research. I attended a confere...
Patient Led Trials
December 08, 2021 16:00 - 39 minutes - 53.8 MBENERGY IN ACTION - EPISODE 038 Patient Led Trials Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease patients. EPISODE HIGHLIGHTS How did you become a rare disease advocate? My advocacy started when my three year old was diagnosed with a rare disorder in 1990. My focus was on our family, but I also began looking to see what can be done medically and I was also pretty quickly introduced to the world of clinical research. I a...
The Patient Teacher Program
December 01, 2021 19:30 - 22 minutes - 31.2 MBENERGY IN ACTION - EPISODE 037 The Patient Teacher Program Jake Athoe is a graduate of Boston University, where he earned a Bachelor of Arts in Biochemistry and Molecular Biology, with a minor in Public Health. During his time at BU, Jake’s interest in metabolism and genetics led him to a four-year research assignment in a lab focused on mutation’s in the energy production of carcinogenic cells. Jake’s graduate work to date has been at the Boston University Medical S...
The Patient Teacher Program
December 01, 2021 19:30 - 22 minutes - 31.2 MBENERGY IN ACTION - EPISODE 037 The Patient Teacher Program Jake Athoe is a graduate of Boston University, where he earned a Bachelor of Arts in Biochemistry and Molecular Biology, with a minor in Public Health. During his time at BU, Jake’s interest in metabolism and genetics led him to a four-year research assignment in a lab focused on mutation’s in the energy production of carcinogenic cells. Jake’s graduate work to date has been at the Boston University Medical School, where he s...
Parents As Rare - Parenting with VCP Disease - Nathan Peck
November 17, 2021 16:30 - 38 minutes - 53.4 MBPARENTS AS RARE - EPISODE 036 Parenting with VCP Disease - Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO of Cure VCP Disease. Through this organization, he is committed to bringing together patients, caregivers, researchers, pharmaceutical companies, other non-profits and investors to identify treatments and ultimately a cure for this rare, genetic disease. EPISODE HIGHLIGHTS What is VCP Disease? VCP disease is caused by a mutation in a...
Parents As Rare - Parenting with VCP Disease - Nathan Peck
November 17, 2021 16:30 - 38 minutes - 53.4 MBPARENTS AS RARE - EPISODE 036 Parenting with VCP Disease - Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO of Cure VCP Disease. Through this organization, he is committed to bringing together patients, caregivers, researchers, pharmaceutical companies, other non-profits and investors to identify treatments and ultimately a cure for this rare, genetic disease. EPISODE HIGHLIGHTS What is VCP Disease? VCP disease is caused by a mutation in a gene called Valo...
The MitoSantas Program
November 10, 2021 16:00 - 19 minutes - 27.4 MBENERGY 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 when a group of moms attending a support group meeting shared their str...
The MitoSantas Program
November 10, 2021 16:00 - 19 minutes - 27.4 MBENERGY 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 when a group of moms attending a support group meeting shared their struggles around Chr...
Meet the Mito Girl
November 03, 2021 15:00 - 23 minutes - 32.8 MBENERGY 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 years old, in the form of a droopy eyelid. Doctors speculated that muscles...
Meet the Mito Girl
November 03, 2021 15:00 - 23 minutes - 32.8 MBENERGY 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 years old, in the form of a droopy eyelid. Doctors speculated that muscles just didn’t deve...
Parents as Rare - Emma and Spencer - The Heart of Parents As Rare
October 20, 2021 14:00 - 45 minutes - 63.2 MBPARENTS 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 anyone really knew. I don't remember the day you told me specifically. Do you recall the first ti...
Parents as Rare - Emma and Spencer - The Heart of Parents As Rare
October 20, 2021 14:00 - 45 minutes - 63.2 MBPARENTS 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 anyone really knew. I don't remember the day you told me specifically. Do you re...
RNE Annual Conference
October 13, 2021 15:00 - 24 minutes - 33.1 MBENERGY 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 lot of resources available to patients, they don't always know about them....
RNE Annual Conference
October 13, 2021 15:00 - 24 minutes - 33.1 MBENERGY 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 lot of resources available to patients, they don't always know about them. We hold an annua...
Making Mito Wishes Come True - A Partnership with Give Kids the World Village
October 06, 2021 15:03 - 34 minutes - 47.1 MBENERGY 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? The village was founded by Henri Landwirth, who has an incredible st...
Making Mito Wishes Come True - A Partnership with Give Kids the World Village
October 06, 2021 15:03 - 34 minutes - 47.1 MBENERGY 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? The village was founded by Henri Landwirth, who has an incredible story as a holocaus...
Trailer - Parents As Rare
September 29, 2021 15:00 - 4 minutes - 5.96 MBTRAILER - 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 disease who was trying to raise children, but it felt like I was. Without the ...
Trailer - Parents As Rare
September 29, 2021 15:00 - 4 minutes - 5.96 MBTRAILER - 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 disease who was trying to raise children, but it felt like I was. Without the community I was s...
AllStripes and Cyclerion - Community Collaboration to Push Clinical Trials Forward
September 22, 2021 16:13 - 48 minutes - 67 MBENERGY 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 AllStripes to help move the research initiative forward. EPISODE HIGHLIGHTS Can you tell us about Cyclerio...
AllStripes and Cyclerion - Community Collaboration to Push Clinical Trials Forward
September 22, 2021 16:13 - 48 minutes - 67 MBENERGY 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 AllStripes to help move the research initiative forward. EPISODE HIGHLIGHTS Can you tell ...
Fight - Research - Hope - Cure
September 16, 2021 07:59 - 38 minutes - 52.8 MBMeet 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. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to ...
Fight - Research - Hope - Cure
September 16, 2021 07:59 - 38 minutes - 52.8 MBMeet 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. In 2021, after successfully blazing the trail for SURF1 gene therapy at UT...
Another Helping
September 08, 2021 11:01 - 26 minutes - 36.1 MBMeet 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.
Another Helping
September 08, 2021 11:01 - 26 minutes - 36.1 MBMeet 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.
Giving You the Power to Take Control of Your Healthcare Journey While Moving Mito Research
July 02, 2021 07:59 - 52 minutes - 72 MBMeet 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.
Giving You the Power to Take Control of Your Healthcare Journey While Moving Mito Research
July 02, 2021 07:59 - 52 minutes - 72 MBMeet 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.
Having a Voice That Deserves To Be Heard
May 26, 2021 20:16 - 45 minutes - 63.2 MBMeet the team at Rare Patient Voice and learn how to make your voice heard!
Having a Voice That Deserves To Be Heard
May 26, 2021 20:16 - 45 minutes - 63.2 MBMeet the team at Rare Patient Voice and learn how to make your voice heard!
Patients as Partners in Ultragenyx LC-FAOD Research
May 12, 2021 13:47 - 40 minutes - 55.7 MBJoin 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. Ultragenyx is proud to partner with MitoAction to provide the LC-FAOD community with information and up...
Patients as Partners in Ultragenyx LC-FAOD Research
May 12, 2021 13:47 - 40 minutes - 55.7 MBJoin 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. Ultragenyx is proud to partner with MitoAction to provide the LC-FAOD community with i...
One Step Closer
May 07, 2021 13:24 - 52 minutes - 72.1 MBListen it to meet MitoCanada's Chief Executive Officer Kate Murray and Chief Development Officer Catherine Mulvale.
One Step Closer
May 07, 2021 13:24 - 52 minutes - 72.1 MBListen it to meet MitoCanada's Chief Executive Officer Kate Murray and Chief Development Officer Catherine Mulvale.
Caregiver Toolboxes...A Lifeline and Support
April 22, 2021 18:11 - 47 minutes - 43.8 MBMeet Nichole Goble and learn more about the Caregivers Action Network!
A Mom and Daughter's Journey With Mito
April 12, 2021 14:19 - 47 minutes - 43.4 MBMeet Kari and her daughter Hailee!
Lifeline: It's More Than What You Think
April 03, 2021 13:28 - 45 minutes - 41.8 MBTune in to learn more about The Oley Foundation!
It's Probably Genetic
March 27, 2021 13:46 - 40 minutes - 37.1 MBTune in to meet Lukas from Probably Genetic and learn how you can find out if their DNA test is right for you!
Adventure Awaits...A Teen's Inspiring Journey with Mito!
March 19, 2021 18:41 - 23 minutes - 22 MBMeet Annie Leeds!
The Effects of Having a Diagnosis of TK2
March 12, 2021 21:51 - 38 minutes - 35.3 MBMeet Mark Jensen and Dagmar Amtmann and learn about their research study with Zogenix!
Making Your Voice Heard Through Song
March 04, 2021 15:19 - 34 minutes - 31.6 MBMeet Dan & Rebecca - the co-founders of Hear Your Song!
Clinical Trials and COVID-19
February 24, 2021 16:45 - 46 minutes - 42.1 MBMeet Dr. Matthew Klein from PTC Therapeutics and learn about navigating clinical trials and COVID-19
Service Dogs...A Man's Best Friend
February 18, 2021 01:44 - 32 minutes - 29.4 MBLearn about service dogs with Can Do Canines and hear about their upcoming event, The Fetching Ball.
Owning My Story...The DadVocate
February 14, 2021 23:35 - 44 minutes - 27.6 MBMeet Rare Disease Dad, Adam Johnson!
No One Fights Alone....A Family's Journey with Mito!
February 14, 2021 23:17 - 48 minutes - 28.5 MBMeet mito warrior and mom, Amanda Butler and her 2 children Katy & Layton!
If You Keep the Patient First, You'll Never Go Wrong
January 27, 2021 21:20 - 33 minutes - 26.5 MBMeet Laurie & Carla from Zogenix!
Life with Frankie...A Mom's Journey with Mito
January 20, 2021 20:03 - 32 minutes - 44.8 MBMeet Sue Leone!
The Positive Power of Peach…A Young Adults Inspiring Journey.
January 06, 2021 16:41 - 33 minutes - 30.6 MBMeet Jenevieve Woods!
COVID Preparedness and Building Your Flu Box…Tips to Help You Stay Safe
January 06, 2021 01:08 - 42 minutes - 58.9 MBMeet Erich Fogg!
MitoSantas – Bringing Smiles to the Faces of Children Affected by Mitochondrial Disease
January 06, 2021 00:55 - 36 minutes - 49.7 MBLearn about our MitoSantas program and meet head Elf – Jennifer Schwartzott!