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Task Force volunteers focus on the family

MitoAction’s Advocacy Task Force was established to produce patient- and family-focused resources addressing the issue of false medical child abuse (MCA) allegations in the mitochondrial disease community. With professional backgrounds in fields as diverse as law, education, nursing, science, and business, each volunteer member of the Advocacy Task Force has brought a unique voice and perspective to the table. 

The Advocacy Task Force materials, the first of which will be released in November, represent a true community response to an issue that has plagued the Mito community and generally is addressed only from the child protection services side.  

"MitoAction could not have produced such a broad and all-encompassing response to the medical child abuse problem without the tireless efforts of our Advocacy Task Force volunteers,” said Christine Cox, MitoAction's Director of Outreach and Advocacy. 

“We also are grateful to our Advisory Council members for providing crucial input and feedback regarding the materials produced by the Advocacy Task Force. With the help of all of these volunteers, MitoAction has created a true community response to an issue that affects our entire community in one way or another.”  

In honor of November as MitoAction’s Volunteer Appreciation Month, meet a few of our Task Force volunteers:

Jessica Shriver

Jessica Shriver has two children diagnosed with presumed primary mitochondrial disease. Her older child died just shy of her fifth birthday in 2011, and shortly after, Jessica's family experienced accusations of medical child abuse regarding her younger child's care. All accusations were resolved, but the experience permanently altered her view of the medical system.

“My desire to volunteer comes from my personal experience,” said Jessica.

Jessica has several roles on the Advocacy Task Force, including working on the subcommittee that is putting together educational materials for medical professionals and finishing a research article comparing the diagnostic criteria for mitochondrial disease and medical child abuse. She is also a patient advocate for MitoAction.

Given her family’s experience with mitochondrial disease, Jessica is in the midst of a career change. She is working toward a Masters in bioethics (she has a Masters in theology). Her next step will be getting her PhD in public health with a focus on children with chronic illness.

"Jessica has turned her family's own experience with medical child abuse allegations into an academic endeavor, seeking to contribute to the medical and bioethics literature in an effort to shift the thinking about MCA toward a more patient-focused model," said Christine.

The Worcester mom gets personal and professional satisfaction knowing that she is helping families get access to the best resources to make the best decisions during very difficult situations.

“People are so appreciative of the assistance,” she said. “To have someone to talk to on the phone and to go through options is a big help. I am honored to be a part of MitoAction.”

 

Kristi Wees

Mito mom Kristi Wees started as a consumer of MitoAction’s teleconferences and iTunes library. She found a great amount of knowledge through these resources, so when she got to a place where she could give back, she did, volunteering for MitoAction in a variety of roles.  

“I’m so thankful for all that MitoAction has given our family and the Mito community,” Kristi said. “I’m paying it forward. I want to share things that we learned along this journey and help make someone else’s journey easier,” said Kristi, who has a background in chemistry.

Kristi’s first foray into volunteering for MitoAction started with hosting several Mito Patient & Family Socials because she “wanted to connect more locally with other Mito families.” That grew into organizing restaurant charity nights in Houston and now Pittsburgh, where she currently lives with her family, helping with the Mito-Autism Task Force, and most recently becoming an integral part of the Advocacy Task Force.

Kristi is currently working on the Mito Navigator Toolkit, which will help patients and families with complex medical needs navigate the medical system in a safe and effective manner.

"Kristi brings not only a scientific approach to the analysis, but also a cross-community perspective as she is very active in the autism community as well,” Christine said. “This broader viewpoint helped us take into account similar MCA cases that actually happened in other disease communities."

MitoAction’s volunteers make a big impact, Kristi said. “It’s a sense that we’re not alone, a feeling of community. It’s a feeling that there are others who walked ahead of us and are willing to share.”

 

Mannie Taimuty-Loomis

In 2004, Mannie Taimuty-Loomis was falsely accused of Munchausen by Proxy and lost custody of three of her children for nearly nine months. She was later vindicated of any wrongdoing.

“No family should have to endure the hell that we’ve endured,” she said. Because of that, she proudly volunteers for MitoAction as a member of the Advocacy Task Force, working on the Mito Navigator Toolkit.

“It’s part of who I am to take what I’ve been through and turn it around and touch and change the lives of other people,” said Mannie.

Mannie didn’t have such support when she was enduring false accusations. Volunteering is her way of giving back.

The Mars, PA, mom brings a unique perspective to the task force. Mannie is a parent and a medical professional. She is a licensed behavior specialist for kids with autism – and a mandated reporter.

“I felt passionate about wrapping up everything we’ve been through and putting a professional aspect to it,” Mannie said.

Said Christine, "As a mom, Mannie Taimuty-Loomis faced allegations of Munchausen's by Proxy herself; as a therapist and mandated reporter, Mannie has had to be on the other side of the table. Her unique experience of viewing the issue from both sides has been invaluable to the Advocacy Task Force."

“I bring awareness on both sides -- the parents’ responsibility and the medical professional’s responsibility -- and how to work together as a team for the best interest of the child,” Mannie said.

The process of putting together the toolkit was very emotional for the team, said Mannie, who also runs the Jonah & The Whale Foundation. “We’ve either gone through it, we’ve seen it, or we’ve seen it from the other side.

 “I’m grateful for the experience,” Mannie continued. “I’m looking forward to the next steps.”