MitoAction Expert Series

Meet Andrew Mele

Join in to listen to RN, Julie Gortze.

Organizations share what they have planned for the next 12 months.

The annual town meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We'll hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease.

We'll hear from the following organizations, among many others!

Please join MitoAction as we welcome Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts. Ms. Hines will be speaking on the basics of estate planning and special needs trusts laws in the U.S. Questions to be answered include:

Ms. Hines has been practicing in the areas of Special Needs, Elder Law and Estate Planning for over fifteen years. She received her JD from Howard University School of Law, her MBA from Suffolk University and her BA from the University of Vermont. Her clients include individuals and families of children with special needs, the elderly and others in the community.

Ms. Hines is the mother of two daughters, one of whom passed away from mitochondrial disease in November of 2013.  Her personal experience as the mother of a child with special needs fuels her passion for quality special needs planning and drives her special understanding and dedication to her practice.

Prior to practicing law, she founded and directed the nonprofit home care company, Special Families-Special Care, Incorporated which created a new standard for caregiving and a greater pay scale for caregivers. After leading the company to $1.5 million in revenue and 50 employees, she merged it with Shriver Clinical Services Corporation of Natick, Massachusetts and shifted her focus to her law practice.

In addition to her membership in the Massachusetts Bar Association, she is a member of the National Academy of Elder Law Attorneys (NAELA), the National Academy of Special Needs Planners (ASNP) and the Massachusetts Association of Women Lawyers (MAWL), serving most recently as President. Recognized as a Distinguished Citizen by ARC Massachusetts and cited for public service by both the Massachusetts State Senate and House of Representatives, Ms. Hines works tirelessly on behalf of people with disabilities. Ms. Hines served as President of the Massachusetts Association of Women Lawyers for 2008-2009 and serves on the Board of Directors for a number of local non-profit organizations.

Join us  with Dr. Fran Kendall to get the answers to these questions and more regarding the use of medical marijuana (cannabis oil) for treatment in mitochondrial disease patients.

Georgia just signed into law the use of cannabis oil for a number of diseases, including mitochondrial disease. Several Mito families in Georgia advocated on behalf of this legislation. While 35 other states have passed similar legislation, Georgia is the first state to include mitochondrial disease in the list of disorders to be treated.

Dr. Kendall will touch on historical perspective, mechanisms of action, dosing, safety and outcome data.

Dr. Kendall trained and served on the staff at Boston Children's Hospital and Harvard Medical School for a number of years. She was the previous 50% owner of a successful genetic laboratory/healthcare provider (Horizon Molecular Medicine), and has extensive experience in the diagnosis and management of children with a wide array of metabolic disorders. She brings this vast experience to her private practice, VMP, LCC, as president and founder. Dr. Kendall is a well respected pediatrician as well as biochemical geneticist, and she has authored numerous research articles on rare diseases ranging from Nieman Pick Type C and mitochondrial disease. As one of the few clinical mitochondrial disease experts, she has a long-term interest in research and clinical aspects of rare metabolic diseases.

We had a wonderful Awareness Rally on Friday, Sept. 5, featuring people who are doing amazing things to raise awareness about mitochondrial disease.

Each speaker brought great ideas to the table and truly demonstrated the diverse ways we can raise awareness in our communities. We want you to get excited and inspired about raising awareness.

Below, you will find some helpful links and ideas from our speakers. Let's take action to improve the lives of patients and families with mitochondrial disease!

Kristi Wees' blog, Baby Food Steps (and her Mito Minutes)

Kristi's California Pizza Kitchen fundraiser Sept. 15-18 in Pittsburgh

Request a CPK fundraiser night

Christine Knox's Mito Quilts of Hope website

Facebook page for Mito Quilts of Hope

Christine's Story on Indiegogo campaign

Facebook page for Cream Mito

Cooper's Race: A MitoAction Energy Walk & 5K Race in Kingsport, TN

Mito Mad Hatter 5K

Here's an easy way to make Mito cookies! Cut out sugar cookies using a jelly bean shaped cutter, then decorate with frosting and round sprinkles. Put some in baggies with an information card about Mito and hand them out to your school class, at work, at parties! Thanks, Nicole and Natalie Dion, for the great idea!

Cooper Open and Cooper Open Scholarship in Greenland, NH

Kelley and Alyssa Curley, along with the rest of their family, make and sell these rainbow loom bracelets for Team Lissy Loo for the MtioAction Energy Walk & 5K. So far they've sold over 700 and made $700 for Team Lissy Loo! For more on Team Lissy Loo, click here.

Jeantine Lunshof was recently diagnosed with Mito and takes every opportunity to educate her Harverd colleagues. Her team for the MitoAction Energy Walk & 5K is Running Genes.

Ethan Allen, captain of Mito Warrior's Platoon, has been collecting bottles and cans for his MitoAction Energy Walk & 5K team. He also holds information booths, has been in the media, and recently participated in the Fonda Fair Convoy for a Cause. For more on his story, click here.

Tell your story to legislators; fight to pass bills; be vocal!

Mito Support of New England meeting feature Rep. Paul Heroux, who is trying to pass a bill to form a Rare Disease Advisory Council in Massachusetts

House Bill 977 would mandate coverage of the Mito Cocktail for all mitochondrial disease patients in the state of Massachusetts.

Thank you for helping raise awareness!

Frustrated with the run-around from health insurance companies? Join us this month as we discuss strategies for advocating for the diagnosis, management, and treatment of your mitochondrial disease:

Dr. Matt Kline & Dr. Guy Miller

Join us with Stealth BioTherapeutics CEO Travis Wilson and others from the Stealth BT team for a live update from Stealth BT (click here to check out their website), information about Bendavia, and details about StealthBioTherapeutics' 2015 mitochondrial myopathy clinical trial.

A Q&A opportunity is included in this important discussion. Parents, patients and families - please join us!

This special teleconference/webinar is offered in collaboration by the UMDF and MitoAction.

For more information about the Stealth Mitochondrial Myopathy Trial, please call the trial question hotline  1-877-227-5018

Or visit www.clinicaltrials.gov  (search Bendavia)

Trial Question Hot Line: 1-877-227-5018

https://www.mitoaction.org/resources/stealth-bt-mitochondrial-myopathy-trial/

Tools for Testing Mitochondrial Disorders: The Latest Advances in Genetics and Genomics

Guest speaker Dr. Richard Boles from Children's Hospital Los Angeles and Courtagen Life Sciences, Inc. to discuss:

Dr. Boles completed medical school at UCLA, a pediatric residency at Harbor-UCLA, and a genetics fellowship at Yale. He is board certified in Pediatrics, Clinical Genetics and Clinical Biochemical Genetics. His current positions include Associate Professor of Pediatrics at the Keck School of Medicine at USC, Director of the Metabolic and Mitochondrial Disorders Clinic at Children's Hospital Los Angeles, and Medical Director at Courtagen Life Sciences Inc. Dr. Boles practices the "bedside to bench to bedside" model of a physician-scientist, combining a very active clinical practice in metabolic and mitochondrial disorders with basic research as Director of a mitochondrial genetics laboratory at the Saban Research Institute. Dr. Boles' clinical and research focus is on polymorphisms (common genetic changes) in the maternally-inherited mitochondrial DNA, and with new technology in the nuclear DNA (chromosomes), and their effects on the development of common functional disorders. Examples include migraine, depression, cyclic vomiting syndrome, complex regional pain syndrome, autism and SIDS. He has 50 published papers on mitochondrial disease. Dr. Boles is responsible for the final review of DNA sequences at Courtagen.