PMGA 2022 Family Convention Speakers

Gina Gallagher & Patricia “Patty” Terrasi, Keynote Speakers

Authors of “Shut Up About Your Perfect Kid” and leaders of the Movement of Imperfection, Gina and Patty are two ordinary mothers who share the extraordinary reality – the joys, challenges, and absurdities – of raising “imperfect” children in a world preoccupied with perfection; bringing humor and triumph to their presentation.

 

Dr. Ghayda Mirzaa, Pediatrician/Medical Researcher, Seattle Children’s Medical Genetics

Dr. Mirzaa is a geneticist and researcher with board certifications in pediatrics, medical genetics, and molecular genetics. The broad goal of her research is to understand the causes, mechanisms and outcomes of human developmental brain disorders, including brain growth abnormalities (megalencephaly, microcephaly), malformations of cortical development and associated co-morbidities including autism, epilepsy and intellectual disability. Her work has led to gene discovery for several disorders associated with brain growth dysregulation.   

Dr. Mirzaa’s lab is focused on identifying the molecular and cellular mechanisms of developmental brain disorders and translating these genomic discoveries to molecularly-guided therapies using high throughput genomic, transcriptomic, and proteomic methods in relevant human tissues, combined with functional validation of genetic variants using human reprogramming and genome editing via CRISPR-Cas9 methods. Her lab houses the first human stem cell tissue culture facility at the Seattle Children’s Research Institute (SCRI) solely dedicated to generating human induced Pluripotent Stem Cells (iPSCs), Neural Progenitor cells (NPCs), cortical neurons and cerebral organoids to model genetic variants that are of high relevance to neurodevelopmental disorders, and to be used as a platform for future pre-clinical high throughput drug screening.

Dr. Rashmi Mullur, Assistant Professor of Clinical Medicine and PMG Mom

Dr. Rashmi Mullur, is a Board Certified Endocrinologist, Internist and Integrative Medicine practitioner in Los Angeles, California. Her medical practice is focused on the use of mind-body approaches and medical technology to improve whole health and cope with chronic pain and disease.   She is an Associate Professor of Clinical Medicine at the David Geffen School of Medicine at UCLA and serves as the Chief of Telehealth for the Greater Los Angeles VA Healthcare System.  In addition to leading her health system in the transition to telemedicine during the pandemic, she also leads efforts to bring core principles of integrative medicine and whole health into the medical curricula for students, trainees, healthcare providers and caregivers as the Education Director for Integrative medicine at UCLA Health.  

Of all of her work titles, her most important role is as a mom.  Her three sons are the light of her life.  Her eldest son, Siddharth, lived 9.5 years with Polymicrogyria.  Despite his severe epilepsy and health challenges, Sidd thrived in school using an AAC to communicate with classmates and friends. Sidd’s smile and laugh still live on through his little brothers and all the ways in which the family remembers and honors Sidd’s spirit.  Dr. Mullur has firsthand experience using integrative approaches to help her son cope with his illness and live his best life.  She previously served on the PMG Awareness Board and has spoken on navigating the health care system as well as on the use of the ketogenic diet in epilepsy.  She is honored to help other families with PMG navigate the vast issues our kids can face.  

Billy Price, Co-Founder of BILLY Footwear

As a teenager, Seattle native Billy Price suffered a spinal cord injury and became paralyzed from the chest down, losing the ability to move his fingers. Daily tasks became difficult, but using his creative mind and unyielding spirit, he never gave up. He continued on, facing life’s challenges with tenacity and determination. Born out of a need, BILLY Footwear was founded on the principle of inclusion and perseverance. Along with co-founder Darin Donaldson, Billy strives to add value to the lives of others and make a measurable difference in the world, one foot at a time.

Eileen Devine, Licensed Clinical Social Worker & Therapist

Eileen Devine, LCSW lives in Portland, Oregon and has over a dozen years of clinical experience. She is also the mother of a child with significant brain-based differences and challenging behavioral symptoms. She believes that kids do well if they can and that when we understand the way a child’s brain works, we then understand the meaning behind challenging behaviors. Eileen’s goal is to not only support parents in feeling more competent and confident in connecting with their child by parenting from a brain-based perspective, but to also recognize their experience as the parent of a child with extraordinary needs and the impact this has on their sense of self and well-being. When these two sides of the coin can be equally addressed, there is less frustration and increased hope in this unique parenting journey. Through this work with parents, Eileen has created The Resilience Room Membership Community and the Brain First Parenting Program, both designed to support parents in their unique parenting journey. In addition to her one-to-one and group work with parents, she also facilitates dozens of workshops and trainings a year related to brain-first parenting and building resilience as parents for caregivers, parents, and providers.

 

Tom Haacker, Owner, Creator, and Driver of the Team PMG Awareness Racing Program

 

Tom Haacker was born on August 24th, 1958, in Sacramento, California. He currently resides in La Quinta, CA with his beautiful wife, Rungthip. Tom has two amazing daughters, Jenny and Kelly, both of whom he is incredibly proud of. Kelly is a special education teacher and Jenny works in advertising. They are both married and currently live with their husbands in Colorado. Tom is also a proud stepfather to Connor and Keeyana. Connor is an entrepreneur and has a successful shoe and clothing business and Keeyana aspires to go on to medical school after her last year at Pepperdine University.

 

Tom’s working career consists of becoming a successful entrepreneur who has founded multiple businesses over the years. He recently retired after running a business involving national banking services from 1993-2022. Underneath his hardworking exterior, he really is one who has a strong desire for excitement and adventure. He started racing motocross in 1969, but his passion and love for Porsches started him on his car racing journey in 2009. He now competes nationally and has won multiple championships over the years, including the National Auto Sport Association Western Endurance Racing Championship (NASA WERC) for the PMG Awareness Organization for the past 6 consecutive years.

 

His connection to the PMG Awareness Organization started in 2007 when he met Rick and Robin Hudson. He learned of their son, Sean, and his PMG diagnosis and wanted to help not only bring awareness to the public, but to connect PMG families together so they knew they weren’t alone in this journey. He has successfully achieved this, and continues to do so, through his racing endeavors.

 

In 2013, Tom had an idea to dedicate his car and the race to the PMG Awareness Organization and its families at the Rolex 24 Hours of Daytona. This race was the first event where PMG families met face to face for the very first time and connections were made. Together, the families and crew placed names of individuals affected by PMG, along with those who had passed, on the car. The race was a combined effort between Tom and three other drivers along with the hard work and determination of the crew. After 24 grueling hours of racing and many adjustments to the car, they managed to take the car across the finish line!

 

Over the years, Tom has been blessed to have met so many wonderful PMG families through his racing. He takes great pride in racing with all the names on the car (he refers to them as his “angels” and “heroes”) which have grown exponentially in numbers since the organization started. He is honored, humbled and privileged to be asked to participate in the 2022 PMG Family Convention and is looking forward to seeing everyone. 

 

Dr. Khaliah Fleming, EdD, MPH, MCHES

Dr. Fleming serves as the Executive Director of the National CMV Foundation. With a background in health education, chronic disease management and prevention, health disparities, health equity, and research partnership coordination, she has managed and led multiple education and outreach public health programs, teams, and initiatives abroad and within her home state. Her love of people, relationship building, public health, and professional development for an emerging cadre of public health professionals influence her work in many professional domains, including the Society for Public Health Education, Society for the Analysis of African American Public Health Issues, and the American Public Health Association.