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2016 year in review

We've been busy!

Make sure you haven't missed any of these great MitoAction speaker presentations or Patient Spotlights in 2016!

We are looking forward to an amazing 2017!

January: Mito Town Meeting

We kicked off the year by sharing all that was planned for the next 12 months. We heard from organizations, camps, and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease.

February: Fatty Acid Oxidation Disorders

Dr. Jerry Vockley, the Chief of Medical Genetics and Director of the Center for Rare Disease Therapy, discussed if patients with mitochondrial defects also have the potential to have fatty acid oxidation defects; how disorders of metabolism such as FAOD and mitochondrial disease impact the body's ability to grow, develop, and function; and the current focus in research for understanding and treating FAODs.

February: NORD's Public Policy Team Discusses Legislative Agenda

The team talked about current federal and state legislative priorities for NORD; the organization's interaction with the Food & Drug Administration, National Institutes of Health, and the Center for Medicare & Medicaid Services; the status of issues important to the Mito community, including mandated insurance coverage for medical foods, vitamins, and supplements used to treat rare diseases and legislation relating to orphan drugs; and more.

March: Incapacity Planning and Guardianship

Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts, and Mark Worthington Esq., Senior Partner at Special Needs Law Group of Massachusetts,
talked about the basics of incapacity planning and guardianship.

April: Mitochondrial Medicine Society Update

MMS president Dr. Amy Goldstein gave an update on the organization, including tansplantation in Mito patients; stroke protocol for MELAS; and standards of care for Mito patients.

April: Extended School Year and Summer Camp Planning

Annette Hines, Esq., of Special Needs Law Group of Massachusetts spoke on the basics of extended school year planning and answered questions that patients or caregivers had about summertime planning.

May: Quality of Life Focus Group

A small focus group met to discuss understanding quality of life from a Mito patient's point of view.

August: Medical Homes

Patient advocate Kristi Wees discussed topics including the importance of a medical home for a mitochondrial disease patient; definition of a medical home; how to establish a medical home; why a medical home is an essential component of good patient advocacy; and tips on maintaining a healthy medical home relationship.

September: Managing the Day to Day of Mitochondrial Disease

MitoAction's Cristy Balcells RN MSN and MaryBeth Hollinger RN MSN discussed tips to improve baseline health; information management for MD office visits; how to assess your symptoms and what to do when you’re sick; a review of the latest recommendations for the Mito cocktail and exercise during this ThriveRx webinar.

October: Molecular Diagnostic Testing for Mitochondrial Disorders

Dr. Darius Adams, a clinical geneticist, discussed molecular diagnostic testing for mitochondrial disorders. He explored gene testing and the rationale for using it as first-line testing, and reviewed traditional diagnostic pathways, newer testing that has become available in recent years, and new approaches to attempt to shorten time to diagnosis and increase precision.

November: Getting Through the Day with Mito

Cheryl M. Clow RN touched on patient care considerations and making the most of the energy you have each day; activities of daily living, their impact on individuals with mitochondrial disorders, and planning ahead; and describing ways to lessen stress and boost the immune system.

December: Exercise and Nutrition Therapy for Mitochondrial Disease

Mark Tarnopolsky MD, PhD, FRCP(C) talked about the theory and practical issues with endurance and resistance exercise therapy; general nutritional guidelines for mitochondrial disease; and the rationale for the mitochondrial cocktail.

December: Stealth BioTherapeutics MMPOWER update

Stealth CEO Reenie McCarthy discussed data from Stealth's Mitochondrial Myopathy clinical trial.

Patient Spotlight banner

January: Noah Polatty, author

Brandi and Chad Polatty were told writing was a struggle for their son, Noah, who has mitochondrial disease. It turns out Noah doesn’t like to write about certain subjects or be told what to write about. This “struggling” writer, just 10 years old, has published a book with his mom, called “Sports Impossible.”

February: Lauren Petty, Mito camper

“When she’s at summer camp, she doesn’t feel left out or different,” says Jennifer Petty, Lauren's mom. "At camp, she’s just another little girl. It makes her feel like a normal kid.” 

March: The Nadrich Sisters, Mito campers

For Maddie Nadrich, camp gives her “the sense that you’re not alone. You can still have fun no matter what your illness is.” And for her sister, Tyler, camp has allowed her to step out of her comfort zone. “I walk up to people and talk to them instead of waiting for them to talk to me,” Tyler said.

April: Luke Krumich, toy designer

Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” said Luke, who designed a toy perfect for his brother and other Mito kids.

May/June: Caitlin Rudisill's seventh-graders, learning about Mito

The seventh-graders at Long Branch (NJ) Middle School know about mitochondrial disease thanks to a creative science teacher. Part of Caitlin Rudisill's curriculum included a unit on mitochondrial disease.

July: Matthew Harty Scholarship winners

Meet four inspiring Mito students: Laura Beyea, Jenevieve Woods, Anne Marie Rady, and Sam Brinneman.

August/September: MitoAction Memories -- Sharing Grief stories

MitoAction Memories, a group of individuals who have lost loved ones to Mito, share their stories of grief in hopes of providing a source of support for others.

October/November: Devon Gottfurcht, bride raises awareness

The groom and groomsmen wore BowTie Cause MitoAction bowties. The bridesmaids wore green. Every guest got a MitoAction bracelet. The bride, Devon Gottfurcht, has mitochondrial disease and she used her wedding to Dan DeSario as a vehicle to raise awareness about Mito. “There’s not a lot of awareness for mitochondrial disease,” she said.

These programs are made possible by your support and our generous partners:

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