Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Hope Flies Health Series-Patient Education Forum

Hope Flies Health Series-Patient Education Forum

Saturday, August 11, 2018 from 9-12pm

Rich Auditorium, Piedmont Hospital Atlanta

Auditorium located in 77 Building of Piedmont Hospital’s Buckhead Campus
1968 Peachtree Road NW – Atlanta, GA

Admission Complimentary

Come join an interactive panel discussion on mitochondrial disease, news, treatments and practical approaches.  Hear from Atlanta area specialists and engage in open conversation for patients and caregivers.

Speakers:

Pediatric Neurologist, Dr. Howard Schub

Adult Neurologist, Dr. Doug Stuart

Amy Utecht, Hearts and Hands Occupational Therapy

Hope Flies Health Series: Parkinson’s and Mitochondrial Disease

 

HFHSWeb.Parkin.Logos_-2

On April 6th, the Foundation for Mitochondrial Medicine (FMM) hosted its second Hope Flies Health Series Webinar: Research Connecting Parkinson’s Disease and Mitochondrial Disease. The Foundation developed the webinar with partners including the Michael J. Fox Foundation (MJFF), Wilkins Parkinson’s Foundation and Sharecare to bring greater awareness to mitochondrial disease and its connection to Parkinson’s disease.

Did You Miss the Webinar?  View the recorded session.

 

About the Webinar Panelists

Wolfdieter Springer, PhD, Assistant Professor of Neuroscience, Mayo Clinic
mayo-clinic-logo
The research interests of Wolfdieter Springer, Ph.D., revolve around cell biology in aging and age-dependent disorders. His primary research focus is on the molecular and cellular mechanisms underlying the pathogenesis of Parkinson’s disease and other related neurodegenerative disorders.

Dr. Springer’s lab takes a combinatorial approach using biochemistry, cell biology and advanced imaging techniques, such as multicolor live cell and high-content microscopy. His lab aims to identify novel genetic and chemical modifiers in cell-based assays, as well as in vivo using C. elegans as a screening tool.Functional insights gained through Dr. Springer’s research will provide the basis to address unmet medical needs, such as identifying faithful biomarkers and developing novel therapeutic strategies that halt or prevent devastating neurodegenerative diseases.

Laura Stanley, Executive Director, Foundation for Mitochondrial Medicine
FMM Logo with Tagine
Laura joined the Foundation for Mitochondrial Medicine in January 2010 as FMM’s first Executive Director. Laura’s professional experience is in corporate human resources, sales and marketing, yet when her eldest son was diagnosed in 2009 with a mitochondrial disease, she was eager for a way to accelerate action. She has transferred her corporate business skills to non-profit leadership. Formerly, Laura served in senior human resources leadership roles at EarthLink and an Atlanta based technology start-up, EzGov, Inc.  Her early career experience evolved in executive search with Korn/Ferry International and sales and marketing in the paper and packaging industries both in Paris, France and the southeastern U.S. FMM website: www.hopeflies.org

Bill Wilkins, Co-Founder, Wilkins Parkinson’s Foundation
Wilkins Logo
Diagnosed with Parkinson’s in 2006, Bill Wilkins, Co-Founder of the Wilkins Parkinson’s Foundation knows firsthand about the disease and has worked tirelessly for treatment every since his diagnosis. In addition to his fundraising and advocacy efforts through the Wilkins Parkinson’s Foundation, he is also a charter member of Emory University’s Udall Parkinson’s Disease Research Center’s Community Outreach Board and serves on the Patient Advisory Council for the Michael J. Fox Foundation. The Wilkins Parkinson’s Foundation (WPF) is a 501(c)(3) charity dedicated to funding programs to raise awareness of Parkinson’s disease (PD). It is the Foundation’s belief that increased awareness creates a general groundswell of support for the entire PD community, from research to patient care to education and support groups. The Foundation works to build awareness through local, regional and national marketing efforts. To find out more, please visit www.wilkins-pf.org.

Moderator: Dr. Darria Long Gillespie, MD MBA FACEP, SVP Clinical Strategy Sharecare
logo-sharecare1.png1
Darria Long Gillespie, MD MBA, FACEP, is Sharecare’s Senior Vice President of Clinical Strategy, an Emergency Department physician at Emory University, and national spokesperson for the American College of Emergency Physicians. Dr. Long Gillespie is a frequent health expert on national TV and has appeared on CNN, CNBC, FoxNews Network, and The Dr. Oz show. … MoreOn Sharecare, she contributes and authors articles on health topics and health news, writes “The Busy Woman’s Guide to Health…and Sanity”, and also hosts Sharecare Radio, an international radio show on iHeart Radio’s RadioMD. Sharecare website is www.sharecare.com

About the Foundation for Mitochondrial Medicine
The Foundation for Mitochondrial Medicine is a 501(c) (3) non-profit organization dedicated to supporting the development of the most promising research and treatments of the many forms of mitochondrial disease. Visit www.mitochondrialdiseases.org for more information.

 

Hope Flies Health Series Webinar—Research Connecting Parkinson’s and Mitochondrial Disease

HF Health Series 2016 web banner2March 24, 2016, ATLANTA – The Foundation for Mitochondrial Medicine (FMM) hosts its next Hope Flies Health Series Webinar: Research Connecting Parkinson’s Disease and Mitochondrial Disease on Wednesday, April 6, 2016 at 1:00 pm EST. The Foundation developed the webinar with partners including the Michael J. Fox Foundation (MJFF), Wilkins Parkinson’s Foundation and Sharecare to particularly bring greater awareness to mitochondrial disease and its connection to Parkinson’s disease. The webinar is free; however registration is requested in advance at www.mitochondrialdiseases.org/hfhswebinars.

During the webinar, participants can learn more about the scientific connection and interest Parkinson’s researchers have in mitochondria and mitochondrial function.  Experts on the call will share the latest developments from a specific research project the FMM and MJFF co-funded exploring this link to activate and stabilize the Parkin protein, which may allow it to break down damaged mitochondria and thereby prevent cell death in some Parkinson’s patients. Stabilizing Parkin will be a positive strike for Parkinson’s disease and for mitochondrial disease.

Panelists for the webinar include Wolfdieter Springer, PhD, Assistant Professor of Neuroscience, Mayo Clinic; Laura Stanley, Executive Director, FMM; Bill Wilkins, Founder of the Wilkins Parkinson’s Foundation, and the moderator will be Darria Gillespie, MD MBA FACEP, SVP Clinical Strategy of Sharecare.

Additional topics planned for discussion include an overview of Parkinson’s and the challenges and progress today surrounding research of Parkinson’s and mitochondrial function; an overview of mitochondrial disease today and progress being made; and a discussion of how patients and caregivers can manage both mitochondrial disease and Parkinson’s disease.

Webinar Panelists

Wolfdieter Springer, PhD, Assistant Professor of Neuroscience, Mayo Clinic
mayo-clinic-logo
The research interests of Wolfdieter Springer, Ph.D., revolve around cell biology in aging and age-dependent disorders. His primary research focus is on the molecular and cellular mechanisms underlying the pathogenesis of Parkinson’s disease and other related neurodegenerative disorders.

Dr. Springer’s lab takes a combinatorial approach using biochemistry, cell biology and advanced imaging techniques, such as multicolor live cell and high-content microscopy. His lab aims to identify novel genetic and chemical modifiers in cell-based assays, as well as in vivo using C. elegans as a screening tool.Functional insights gained through Dr. Springer’s research will provide the basis to address unmet medical needs, such as identifying faithful biomarkers and developing novel therapeutic strategies that halt or prevent devastating neurodegenerative diseases.

Laura Stanley, Executive Director, Foundation for Mitochondrial Medicine
FMM Logo with Tagine
Laura joined the Foundation for Mitochondrial Medicine in January 2010 as FMM’s first Executive Director. Laura’s professional experience is in corporate human resources, sales and marketing, yet when her eldest son was diagnosed in 2009 with a mitochondrial disease, she was eager for a way to accelerate action. She has transferred her corporate business skills to non-profit leadership. Formerly, Laura served in senior human resources leadership roles at EarthLink and an Atlanta based technology start-up, EzGov, Inc.  Her early career experience evolved in executive search with Korn/Ferry International and sales and marketing in the paper and packaging industries both in Paris, France and the southeastern U.S. FMM website: www.hopeflies.org

Bill Wilkins, Co-Founder, Wilkins Parkinson’s Foundation
Wilkins Logo
Diagnosed with Parkinson’s in 2006, Bill Wilkins, Co-Founder of the Wilkins Parkinson’s Foundation knows firsthand about the disease and has worked tirelessly for treatment every since his diagnosis. In addition to his fundraising and advocacy efforts through the Wilkins Parkinson’s Foundation, he is also a charter member of Emory University’s Udall Parkinson’s Disease Research Center’s Community Outreach Board and serves on the Patient Advisory Council for the Michael J. Fox Foundation. The Wilkins Parkinson’s Foundation (WPF) is a 501(c)(3) charity dedicated to funding programs to raise awareness of Parkinson’s disease (PD). It is the Foundation’s belief that increased awareness creates a general groundswell of support for the entire PD community, from research to patient care to education and support groups. The Foundation works to build awareness through local, regional and national marketing efforts. To find out more, please visit www.wilkins-pf.org.

Moderator: Dr. Darria Long Gillespie, MD MBA FACEP, SVP Clinical Strategy Sharecare
logo-sharecare1.png1
Darria Long Gillespie, MD MBA, FACEP, is Sharecare’s Senior Vice President of Clinical Strategy, an Emergency Department physician at Emory University, and national spokesperson for the American College of Emergency Physicians. Dr. Long Gillespie is a frequent health expert on national TV and has appeared on CNN, CNBC, FoxNews Network, and The Dr. Oz show. … MoreOn Sharecare, she contributes and authors articles on health topics and health news, writes “The Busy Woman’s Guide to Health…and Sanity”, and also hosts Sharecare Radio, an international radio show on iHeart Radio’s RadioMD. Sharecare website is www.sharecare.com

About the Foundation for Mitochondrial Medicine
The Foundation for Mitochondrial Medicine is a 501(c) (3) non-profit organization dedicated to supporting the development of the most promising research and treatments of the many forms of mitochondrial disease. Visit www.mitochondrialdiseases.org for more information.

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For more information: Foundation for Mitochondrial Medicine: Jennifer Grizzle, 770.409.1152 or jennifer@theprstudio.com

 

40 Days of Glow: Day 22 – Understanding Mitochondrial Disease

How is Mitochondrial Disease Diagnosed?

As recent as the 1980’s there was still a lot of debate about whether mitochondrial disease even existed.  The first grants from the NIH were to look into mitochondrial disease and Parkinson’s and with a number of published papers, the road started from there leading to many researchers and these relationships that are more and more prevalent

Listen to molecular neurogeneticist, Dr. John Shoffner
describe the impact of mitochondria.

When you eat, the food you are putting in your body is going to your mitochondria.  When you eat fats, proteins, carbohydrates, they go through a number of biochemical changes and go to the mitochondria. The mitochondria turn that in to ATP energy. ATP isn’t “get up and go” energy it’s the fuel that runs many of the biochemical and chemical reactions in your body for your brain, your heart, your muscle and all your other organs.  Mitochondria are tiny power plants in almost every cell in our body.  This understanding is an important first step in grasping how all diseases like Parkinson’s, Autism and mitochondrial diseases tie together.  Also, mitochondrial function is why we breathe, over 95% of the oxygen you are breathing is used by your mitochondria.  It is used in conjunction with the food you eat to make energy.

Web of ConnectivityDiseases are a spectrum, changes that range from irreversible, to reversible to normal.  The optimism is in the changes  that can push those mitochondria to more normal function.  In the way they work, tiny bits of improvement can produce big functional changes, which is a really important concept.

Mitochondria and their ability to make energy are very genetically complex, in fact, one of the most complicated genetic and biochemical systems in your body.  It has many faces.  It is the only system in the body where part of it comes from one genome, which is very small, made up of 16 ½ thousand molecules called the mitochondrial DNA, essentially coming from your mother.  But, only 10% of the diseases are caused by mutations there, the rest of the almost 700 genes are inherited usually from both parents and are scattered all over your 46 chromosomes.

Though the impression most have of mitochondrial disease is a disorder that presents itself at birth, it can appear at any age. For some it develops over time. We’re learning it’s not at all rare but, due to a lack of physician and public awareness, this disease is not often diagnosed. Only in the past 10 years, with advances in genetics and molecular biology, have we a better understanding of the complexity in mitochondrial disorders. Even so, the definitive cause (or causes) of mitochondrial disease continues to evolve.

Get Your Glow On: Tell a friend how to pronounce mitochonrdia:  mī-tə-ˈkän-drē-ä)  http://www.oxfordlearnersdictionaries.com/us/definition/english/mitochondrion

40 Days of Glow: Day 8 – Autism and Mitochondrial Disease

Many genes are contributors to autism, but are not the cause.  Over 800 genes are contributors.  It’s a whole body condition.  In many autism cases it is a whole-body condition, where more than one system is affected and this is consistent with mitochondrial issues.  There is evidence for environmental impacts. Visible and social behavior represent symptoms of underlying systemic disturbances, including metabolism.

In 2012, The Foundation for Mitochondrial Medicine hosted a Hope Flies Health Series and featured Dr. Martha Herbert from Harvard University & Massachusetts General Hospital in Boston to speak on the link between Autism and Mitochondrial Disease.

Share this information and comment on this post.  Everyone who shares and comments will be entered in a drawing for the book, The Autism Revolution by Dr. Martha Herbert

Overview of the Autism Connection to Mitochondrial Dysfunction:
autism-disease-webMitochondrial disease and dysfunction are more common in ASD (Autism Spectrum Disorder) patients than the general population.  (~7%)

Mitochondria are exceedingly environmentally vulnerable to many things.

Inflammation and oxidative stress often go with mitochondrial dysfunction which is common with autism.  Brain function and synapses need energy.  Less energy  leads to weaker signals.  Weaker signals lead to weaker, smaller brain networks.  Mito dysfunction leads to excitoxicity , noisier, more inefficient synapses.  The result of inefficient, wasteful, poorly focused synapses means showing up as good and bad days, just like the flickering of electricity or a power plant.

In some mitochondrial disease patients autism symptoms show up on rougher days but not on calm/easy days. These folks may be balanced on a razor edge of mitochondrial dysfunction.  This suggests that mitochondrial problems may contribute to how the brain “creates” autistic behaviors.

Treatments on the Horizon:
Modest changes can have large functional effects.

Propranolol, a beta blocker drug has shown in brain connectivity studies that this is a changeable “state” not a fixed “trait.”  This isn’t necessarily a cure for autism but shows that the brain can improve and improve fast.  New drug possibilities in the pipeline are exciting and in the meantime, little things can make a big difference.  Optimize nutrition and minimize toxins.

Whole-Body Brain Imaging looks at the impacts of diet and metabolic treatments by measuring brain function and metabolites to see if they are related. Brain imaging that looks at mitochondria measure bioenergetics (the study of transformation of energy in living organisms), oxidative stress (caused by an imbalance between the production of reactive oxygen and a biological system’s ability to readily detoxify the reactive intermediates or easily repair the resulting damage) and brain function.

“Wild-type microglia arrest pathology in a mouse model of Rhett syndrome”  Derecki et al, Nature, 2012, an interesting study that highlights reversible change and indicates promise for related areas.  Every stressor that you can take out of the system can help the body get better.

Hope for Families/Future:
Greater sense of connectivity in science.  Recipe for Improvement: Research shows that excellent foods, high in nutrients with minimal allergens and minimal toxic and infectious burdens brings drastic changes to body function. Looking at the core, the mitochondria open an exciting new world of possibilities.

Hope Flies Health Series Fuels Connections!

This past November 2012, the Foundation for Mitochondrial Medicine (FMM) hosted our inaugural Hope Flies Health Series: An Evening with Holly Robinson Peete at the Four Seasons Hotel in Atlanta. This debut event was a wonderful success with nearly 300 guests in attendance that helped raise awareness of FMM and fuel connections between closely-related diseases to mitochondrial disease, including Autism and Parkinson’s.

Keynote speaker, Holly Robinson Peete, shared her journey with her father’s Parkinson’s and her son’s autism and how she has become advocate on behalf of her family and how others can do the same. Our panel of clinical experts: Dr. Martha Herbert, Robin Morris, Ph.D, Dr. John Shoffner and Dr. Zbigniew Wszolek, offered practical information and gave hope to families for the future as they shared exciting details of emerging research and treatments for mitochondrial disease, Autism & Parkinson’s disease.

The inaugural Hope Flies Health Series served as a tremendous catalyst to help fuel connections and heighten awareness between several key collaborative organizations closely related to mitochondrial disease including Autism Speaks, The Marcus Autism Center, American Parkinson’s Disease Foundation (APDA), Wilkins-Parkinson’s Foundation and the Michael J. Fox Foundation. Through the Hope Flies Health Series, we have planted wonderful seeds that we are confident will grow and bloom into long-term collaborations between FMM and these organizations. Fueling connections that evening transpired in many inspirational ways: such as a Parkinson’s patient exchanging history and data for research with world renowned expert, Dr. Wszolek or the excitement and synergy when two of the medical experts met face-to-face for the first time, despite years of research together.

We are grateful to our sponsors: Stealth Peptides, Hearts and Hands Therapy Services, Amicus Therapeutics, Knopp Biosciences, Medical Neurogenetics Laboratory (MNG), Northside Hospital and Dickey Media. Their generous contributions made it possible for us to underwrite attendance of many deserving faculty and family members throughout the Southeast.

We were thrilled to have participation and support of faculty and parents at many key schools and Adaptive Learning Centers in the Atlanta area.

• Adaptive Learning Center
• Alexsander Academy
• The Bedford School
• Clearwater Academy
• The Cottage School
• Cumberland Academy
• Elaine Clark Center
• Emory University
• Georgia State University
• Georgia Tech University
• Hirsch Academy
• Jacob’s Ladder
• Kennesaw State University
• Mercer University
• Lionheart School
• Porter Academy
• Sheltering Arms
• The Schenck School

We look forward to sharing additional updates with our FMM Friends & Families as we expand our Hope Flies Health Series and education offerings throughout 2013.

To learn about upcoming events, make sure to subscribe to The Firefly Newsletter.

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