Our Mission
About & History
Founded by a dedicated board of volunteers, the Hypertrophic Olivary Degeneration Association is committed to serving the entire HOD community patients, care partners, families, and friends.
Born from a personal journey to fill a void in information and support, HODA was created to attract critical research and funding for this rare disease. We exist to ensure that no one navigates Hypertrophic Olivary Degeneration alone.
GOVERNING MEMBERS
Meet the Board
Christina Coates
Diagnosed with a rare brain disease, Christina Coates was forced to medically retire from a career in Accounting and Finance. Following a brain surgery in 2021, she developed HOD and discovered a significant lack of available information about the condition. Instead of languishing, she officially created the HOD Association to fight for research and awareness. Today, she works tirelessly with HODA to spread awareness, provide patient and provider education, and secure funding opportunities for the community.
Rebecca Munroe
With a career spanning over 20 years in the furniture industry as a District Operations Manager, Rebecca joined her sister Christina to form HODA in 2021 after Christina’s HOD diagnosis. Rebecca’s motivation stemmed from her experience of feeling helpless when she searched the internet for a prognosis, treatments, or cures and came up empty-handed. She considers it an enormous honor to serve the HOD community and is dedicated to helping HODA bring crucial awareness and hope to patients and families.
Christine Hackenbruck
Christine is a rare disease advocate who brings a unique perspective to HODA as both a person with narcolepsy and a parent of a child with the same condition. With over 20 years of experience working with nonprofits, she is passionate about connecting rare disease families to community and support. Born in New Orleans, LA, she resides in Oregon with her husband and three children. Christine has also developed a knack for webinar production and looks forward to assisting HODA with future projects and outreach.
Kim Schaefer
Born in Virginia and raised overseas, Kim returned to Virginia in 1989, embarking on a remarkable academic professional journey. After graduating at the top of her class from Roanoke College with a BA in Psychology, she built a career in Telecom and IT. Her life took an unexpected turn after a stroke in May 2021 led to her HOD diagnosis. Now residing with her mother, she continues to embrace life with courage and determination, finding strength and support in her family as she navigates this new chapter.
Kenneth Norton
With a career spanning over 20 years in the furniture industry as a District Operations Manager, Rebecca joined her sister Christina to form HODA in 2021 after Christina’s HOD diagnosis. Her motivation stemmed from feeling helpless and deeply concerned when she searched the internet for a prognosis, treatments, or cures and came up empty-handed. She considers it an enormous honor to serve the HOD community and is dedicated to helping HODA bring crucial awareness and hope to patients and families.
GOVERNING MEMBERS
Meet the Board
Christina Coates
Diagnosed with a rare brain disease, Christina Coates was forced to medically retire from a career in Accounting and Finance. Following a brain surgery in 2021, she developed HOD and discovered a significant lack of available information about the condition. Instead of languishing, she officially created the HOD Association to fight for research and awareness. Today, she works tirelessly with HODA to spread awareness, provide patient and provider education, and secure funding opportunities for the community.
Rebecca Munroe
With a career spanning over 20 years in the furniture industry as a District Operations Manager, Rebecca joined her sister Christina to form HODA in 2021 after Christina’s HOD diagnosis. Rebecca’s motivation stemmed from her experience of feeling helpless when she searched the internet for a prognosis, treatments, or cures and came up empty-handed. She considers it an enormous honor to serve the HOD community and is dedicated to helping HODA bring crucial awareness and hope to patients and families.
Christine Hackenbruck
Christine is a rare disease advocate who brings a unique perspective to HODA as both a person with narcolepsy and a parent of a child with the same condition. With over 20 years of experience working with nonprofits, she is passionate about connecting rare disease families to community and support. Born in New Orleans, LA, she resides in Oregon with her husband and three children. Christine has also developed a knack for webinar production and looks forward to assisting HODA with future projects and outreach.
Kim Schaefer
Born in Virginia and raised overseas, Kim returned to Virginia in 1989, embarking on a remarkable academic professional journey. After graduating at the top of her class from Roanoke College with a BA in Psychology, she built a career in Telecom and IT. Her life took an unexpected turn after a stroke in May 2021 led to her HOD diagnosis. Now residing with her mother, she continues to embrace life with courage and determination, finding strength and support in her family as she navigates this new chapter.
Kenneth Norton
With a career spanning over 20 years in the furniture industry as a District Operations Manager, Rebecca joined her sister Christina to form HODA in 2021 after Christina’s HOD diagnosis. Her motivation stemmed from feeling helpless and deeply concerned when she searched the internet for a prognosis, treatments, or cures and came up empty-handed. She considers it an enormous honor to serve the HOD community and is dedicated to helping HODA bring crucial awareness and hope to patients and families.
External Medical Advisory
Meet the Board
Dr. Katelyn Bird, MD
Dr. Katelyn Bird is a board-certified neurologist and movement disorder specialist at Boston Medical Center. She earned her medical degree from Indiana University and completed her residency and fellowship at Boston Medical Center, where she now serves as faculty. Specializing in diagnosing movement disorders like Parkinson’s and HOD, she is experienced in Deep Brain Stimulation and botulinum toxin injections. Dr. Bird is dedicated to medical education, quality improvement, and addressing healthcare disparities.
Steve Cairns
After a catastrophic stroke in 2017, Steve, a Brain Injury Movement Rehabilitation Specialist, was told he faced a multi-year recovery with permanent deficits. Defying expectations, he rehabilitated himself in just 10 weeks, producing results his surgeon called ‘amazing.’ Inspired by his own journey, he founded ‘The Movement Project’ to help other brain injury patients with their recovery process. He now presents his work at international conferences and provides specialized rehabilitation support in the UK and US.
Brittany Halliday
Brittany Halladay is a bilingual clinical fellow speech-language pathologist, recently graduated from Pacific University in Oregon. She is passionate about serving and connecting with underrepresented and diverse populations, with experience in both school and inpatient rehabilitation settings. Her clinical interests include cognition, aphasia, dysphagia, dysarthria, and language/speech-sound development in children. Brittany is excited to be joining the HODA board to serve and connect with this community.
Dr. Pawel Tacik, MD PhD.
Dr. Tacik is a consultant neurologist at the University of Bonn Medical Center in Germany. He received his medical degree in Poland and completed his neurology residency, doctorate, and postdoctoral degrees in Germany. His experience includes working as a visiting postdoctoral research fellow at the Mayo Clinic in the USA. Dr. Tacik has served as a primary investigator on various clinical trials and received multiple research grants. A trusted member of several medical associations, he is fluent in four languages.
Dr. Philip Tipton, MD
Dr. Philip Tipton is an Assistant Professor at the Mayo Clinic in Jacksonville. After graduating summa cum laude from the University of Tennessee, he earned his medical degree and completed his Neurology Residency and two fellowships at the Mayo Clinic, specializing in Behavioral and Movement Disorders. His research focuses on parkinsonian neurodegenerative diseases, using new approaches to identify insights for diagnosis and treatment. He has also published work on a disease-modifying treatment for a rare condition.
External Medical Advisory
Meet the Board
Dr. Katelyn Bird, MD
Dr. Katelyn Bird is a board-certified neurologist and movement disorder specialist at Boston Medical Center. She earned her medical degree from Indiana University and completed her residency and fellowship at Boston Medical Center, where she now serves as faculty. Specializing in diagnosing movement disorders like Parkinson’s and HOD, she is experienced in Deep Brain Stimulation and botulinum toxin injections. Dr. Bird is dedicated to medical education, quality improvement, and addressing healthcare disparities.
Steve Cairns
After a catastrophic stroke in 2017, Steve, a Brain Injury Movement Rehabilitation Specialist, was told he faced a multi-year recovery with permanent deficits. Defying expectations, he rehabilitated himself in just 10 weeks, producing results his surgeon called ‘amazing.’ Inspired by his own journey, he founded ‘The Movement Project’ to help other brain injury patients with their recovery process. He now presents his work at international conferences and provides specialized rehabilitation support in the UK and US.
Brittany Halliday
Brittany Halladay is a bilingual clinical fellow speech-language pathologist, recently graduated from Pacific University in Oregon. She is passionate about serving and connecting with underrepresented and diverse populations, with experience in both school and inpatient rehabilitation settings. Her clinical interests include cognition, aphasia, dysphagia, dysarthria, and language/speech-sound development in children. Brittany is excited to be joining the HODA board to serve and connect with this community.
Dr. Pawel Tacik, MD PhD.
Dr. Tacik is a consultant neurologist at the University of Bonn Medical Center in Germany. He received his medical degree in Poland and completed his neurology residency, doctorate, and postdoctoral degrees in Germany. His experience includes working as a visiting postdoctoral research fellow at the Mayo Clinic in the USA. Dr. Tacik has served as a primary investigator on various clinical trials and received multiple research grants. A trusted member of several medical associations, he is fluent in four languages.
Dr. Philip Tipton, MD
Dr. Philip Tipton is an Assistant Professor at the Mayo Clinic in Jacksonville. After graduating summa cum laude from the University of Tennessee, he earned his medical degree and completed his Neurology Residency and two fellowships at the Mayo Clinic, specializing in Behavioral and Movement Disorders. His research focuses on parkinsonian neurodegenerative diseases, using new approaches to identify insights for diagnosis and treatment. He has also published work on a disease-modifying treatment for a rare condition.
External Medical Advisory
Meet the Board
Dr. Vikram Shakkottai, MD, PhD
Dr. Shakkottai is the Dedman Family Distinguished Chair in Neurologic Disease at UT Southwestern Medical Center, where he also directs the Ataxia Clinic. He earned his medical degree in India and his PhD in California, followed by his residency and fellowship at Washington University and the University of Michigan. His research focuses on understanding how neuronal dysfunction contributes to motor problems in cerebellar ataxia, with the ultimate goal of translating preclinical work into highly effective, impactful clinical trials for patient-centered, real-world applicable therapy.
Dr. Saravanan Thangarajan, MDS, MBA, FICOI, FAD
Dr. Saravanan Thangarajan, a Global Health Research Scholar at Harvard Medical School, has extensive experience in public and healthcare administration. His work in India during the COVID-19 pandemic, managing health initiatives with digital technologies, earned widespread recognition. As an advocate for innovative and inclusive healthcare policies, he is a recognized editorial reviewer and guest speaker. He is deeply committed to advancing medical understanding and advocating for rare health conditions.
External Medical Advisory
Meet the Board
Dr. Vikram Shakkottai, MD, PhD
Dr. Shakkottai is the Dedman Family Distinguished Chair in Neurologic Disease at UT Southwestern Medical Center, where he also directs the Ataxia Clinic. He earned his medical degree in India and his PhD in California, followed by his residency and fellowship at Washington University and the University of Michigan. His research focuses on understanding how neuronal dysfunction contributes to motor problems in cerebellar ataxia, with the ultimate goal of translating preclinical work into highly effective, impactful clinical trials for patient-centered, real-world applicable therapy.
Dr. Saravanan Thangarajan, MDS, MBA, FICOI, FAD
Dr. Saravanan Thangarajan, a Global Health Research Scholar at Harvard Medical School, has extensive experience in public and healthcare administration. His work in India during the COVID-19 pandemic, managing health initiatives with digital technologies, earned widespread recognition. As an advocate for innovative and inclusive healthcare policies, he is a recognized editorial reviewer and guest speaker. He is deeply committed to advancing medical understanding and advocating for rare health conditions.