MitoAction Expert Series

Dr. Pat O’Malley from Massachusetts General Hospital talks about long-term care and quality of life support for adults and children with mitochondrial disease.

 This month’s meeting is held in loving memory of Christopher A. Clark, whose family remained dedicated to helping him have the best quality of life possible every day.

Dr. O’Malley has cared for several families with mitochondrial disease and helped them to find quality of life and balance despite the tragic progression of the disease. Join us as we learn more about palliative care and hospice, and work to uncover the benefits and break down the myths around what is often only associated with end-of-life.

Dr. O’Malley has trained in pediatrics, pediatric critical care, emergency medicine and palliative care at Massachusetts General Hospital and Children’s Hospital Boston.  She has served as the director of the Pediatric ED at MGH for 25 years and is also the director of the new Pediatric Palliative Care Team.

lanning for your future with Mito… a workshop for parents & adult patients

Monthly International Teleconference Outreach

“It feels like each day is all I can handle – how can I possibly plan for the future??”

Living every day with mitochondrial disease as an adult patient or a parent caring for an affected child can be completely consuming and overwhelming. Many of us forget or put off thinking about the future, especially when the future feels so uncertain.

Jack Raycroft joins MitoAction with a compassionate perspective on simple steps you can take today to help ensure that your family’s future is more secure, giving us a little more peace of mind while we continue to live for today with Mito.

Each month, MitoAction holds a toll-free, international teleconference to address topics important to the Mito community.

Join us to discuss “LIVING TODAY WITH MITO & PLANNING FOR THE FUTURE” with guest speaker Jack Raycroft from Baystate Financial Services.

John “Jack” Raycroft is a financial planner at Baystate Financial Services and a MetDESK Specialist with MetLife’s Division of Estate Planning for Special Kids. He works exclusively with families who have a dependent with special needs. Through workshops and consultations, Jack educates families (and the organizations that support them) on the issues critical to successful special needs planning. His work helps families prepare for the future and the time when they will not be present, or able, to care for their themselves or their children. He educates them on what they can do today and tomorrow to make their future more secure.

Jack speaks publicly throughout Massachusetts, New Hampshire and Rhode Island on the subject of special needs planning. He has presented at multiple organizations including The National Downs Syndrome Congress and LADDERS at Massachusetts General Hospital for Children.

Additionally, Jack serves as the Adjunct Planned Giving Director of maaps(Massachusetts Association of Approved Private Schools), a network of over 100 schools/programs serving all populations of the special needs pre-22 community. Jack provides charitable planning services to these schools upon request.

Jack is a parent of a child with special needs and he volunteers his time for the North Shore Arc, the Special Olympics and The Independent Living Center of the North Shore.

MitoAction Interview with Stephen

MitoAction Interview with Jamie Emory

The possible relationship between metabolic disorders, elevated lactic acid levels, and features of autism spectrum disorder have been described in the medical literature since the early 90’s.  In fact, much research exploring the correlation between autism or ASD (autism spectrum disorder) and mitochondrial dysfunction has been published throughout the last decade, long before the Hannah Poling case (March 2008) brought the association to the public’s attention.

Since the US Vaccine Compensation Board determined, based on Hannah Poling’s case, that “vaccines significantly aggravated an underlying mitochondrial disorder causing brain damage with features of autism spectrum disorder”, a whirlwind of confusion amongst parents of affected children has occurred.

Are vaccines safe?

Do children with mitochondrial disease have a potential to develop autism, or do children with autism have an underlying mitochondrial disorder?

Is mitochondrial dysfunction the “cause” of autism or behavior compatible with ASD?

What do we really know and understand about the relationship between autism spectrum disorders and mitochondrial cytopathies?

Join us as Dr. David Holtzman from Massachusetts General Hospital shares his perspective and research on the autism-mitochondrial disease debate.

Join us this month with one of Atlanta’s most honored occupational therapists, Susan Orloff, OTR/L.  Susan is owner of Children’s Special Services and has over 30 years experience helping children in both schools and the clinical setting.  Susan brings fresh perspective and ideas to help adults AND children with mitochondrial disease through her hands-on experiences.  Read Susan’s article on “Understanding the Energy Connection”.

Susan shares some of her perspective about the frustration people with mitochondrial disease may feel.  She says, “The pessimistic view of life in the early part of the last century seems very close to what some children are probably feeling about their daily life in school. It is anxiety-provoking and tiresome to go to a place everyday where, no matter how hard you may try – you fail. But it doesn’t have to be this way. Occupational therapy is a treatment that is medically based to provide habilitation and rehabilitation to individuals experiencing difficulties in daily life functions. With children, this includes–but is not limited to–assistance with the attainment of age appropriate motor and visual perceptual abilities. The abilities include both academic and social skills required for life success.”

Susan hopes to offer some new ideas to adults and children who face fatigue, muscle weakness, and frustration due to their mitochondrial disorder.  Susan is the author of Learning Re-Enabled and has won many awards for her outstanding contribution to the disability community.

MITO Meeting: MONTHLY INTERNATIONAL TELECONFERENCE OUTREACH

Join us with Dr. Katherine Sims from Massachusetts General Hospital as we take a closer look at understanding genetic inheritance patterns of mitochondrial disease.

Teen Interview with Harrison

Teen Interview with Olivia

Teen Interview with Annalise