During a time when families with children with mitochondrial disease may face accusations of medical child abuse or munchausen’s by proxy, it is incredibly important to advocate responsibly and communicate effectively. Guest speaker Mannie Taimuty-Loomis, MA, LBS and Executive Director of the Jonah & The Whale Foundation, Inc. discusses:
Mannie Taimuty-Loomis is the founder and executive director of Jonah & The Whale Foundation, a nonprofit organization that assists families, primarily in the US and Canada, dealing with disabled and chronically ill children. Ms. Taimuty-Loomis holds a Master’s Degree in Higher Education, specializing in teaching. Her thesis focused on the transitional needs of autistic high school students wishing to pursue a college education. Adding to her expertise in Autism Spectrum Disorders, Mannie is also the co-author of Autism and Higher Education: Putting the Pieces Together, publication date TBA. In addition to running J&TWF, Mannie currently works as a Behavioral Specialist Consultant where she writes and oversees clinical intervention service plans for children with autism. Finally, Ms. Taimuty-Loomis is more than just a professional in the field – she is also a mother of five children, three of whom have suffered or continue to suffer with Mitochondrial Disease. Adding to her personal experience with the difficulties in raising a child with special needs, Ms. Taimuty-Loomis and her family not only faced the unexpected death of their son Jonah (the namesake of the Foundation) in 2001, but they also faced false MSbP allegations regarding their other two afflicted children back in 2004. Although she and her husband were vindicated of all wrongdoing, the experience has left a long-lasting impact; not only on their family and how they deal with Mitochondrial Disease, but also in how they run the Foundation and continue their mission to help families advocate responsibly and communicate effectively.Date: 02/03/2012
Join MitoAction and Dr. Mark Korson, VMP Genetics, as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community.