Who Are We?
The Hypertrophic Olivary Degeneration Association’s boards are comprised of volunteer members who are dedicated to serving the community of HOD patients, care partners, families and friends.
Our Mission
The Hypertrophic Olivary Degeneration Association was founded as a first step in the fight to attract research and funding for this rare brain disease. Patients who are diagnosed are often not told anything about the disease and that it will resolve on its own. We, as patients, know differently. Meet the Board Members who are deeply honored to serve you here and please reach out to any of us with questions, thoughts, or concerns at any time.
Our Governing Board
President & Founding Member
Christina Coates
Christina has worked in the private sector for her entire career in Accounting and Finance Management roles. However, she was forced to medically retire in 2023 due to complications from HOD. In 2017, after struggling for several weeks with constant headaches, particularly migraines, Saw her doctor. She was subsequently diagnosed with a rare Cerebral Cavernous Malformation. The lesion was on the 4th ventricle of her brain.
Consequently, after undergoing brain surgery to excise the malformation in February of 2021, she developed HOD. The disease was characterized by a demyelinating lesion on the brain stem. In the aftermath of the diagnosis, Christina learned that there was little to no information about HOD available.
Despite the constant HOD symptoms, Christina works tirelessly with HODA to spread awareness of HOD. One can often find her explicitly working on patient and provider education, program structure, recruiting volunteers, and looking for funding opportunities.
She officially created the patient organization on October 5, 2021, instead of languishing in her sadness. Finally, in her spare time, she enjoys reading, writing, and learning more about the brain and brain injury. She enjoys spending time with her family, her dog ‘Tuna’, cats ‘Lizzy’ and ‘Jelly’ and grand-cat ‘Lasso’. Email Christina directly at President@HODAssoc.org
Read Christina’s published pieces here: Brain and Life Magazine
TBI Hope and Inspiration Magazine
Listen to Podcasts featuring Christina here:
Vice President & Founding Member
Rebecca Munroe
Rebecca has 20+ years experience working in the furniture industry as a District Operations Manager. Her role accordingly consists primarily of overseeing retail store, warehouse operations, and customer service. In 2021, Becky emphatically agreed to help form HODA after Christina received the HOD diagnosis. Feeling helpless when she searched the internet for a prognosis, potential treatments or cures and coming up empty handed. Indeed, Becky feels it is an enormous honor to serve the HOD community. Rebecca enjoys her marriage of 14 years. With her spouse, they spend their time with family, fitness, experiences, and cheering on the Arizona Cardinals. Email Rebecca directly VicePresident@HODAssoc.org
Listen to Becky’s Podcast with Alyssa from CoRDS here:
Operations
Christine Hackenbruck
Christine is a rare disease advocate, a person with narcolepsy, and the parent of a person with narcolepsy. She has worked with nonprofit organizations for over 20 years. Born and raised in New Orleans, LA, she resides in Oregon with her husband and 3 children. Christine unquestionably is passionate about connecting rare disease families to community. She has developed a knack for webinar production and can’t wait to assist HODA with future projects. Email Christine directly at operations@hodassoc.org
Community Resource Board Member
Kim Schaefer
Born in Virginia and raised overseas, Kim returned to Virginia in 1989, setting the stage for a remarkable academic and professional journey. Graduating at the pinnacle of her class from Roanoke College with a BA in Psychology, she demonstrated early on a dedication to excellence and a thirst for knowledge.
However, her journey to Marymount for graduate studies was interrupted by motherhood, yet her commitment to learning remained steadfast. Transitioning to Telecom and IT, she navigated complexities until a stroke in May 2021 led to her HOD diagnosis, marking a new chapter in her life.
With two grown children, now in their twenties, and a furry companion by her side, she continues to embrace life with courage and determination, finding strength in the support of her family, particularly her mother, with whom she resides.
Email Kim directly at Resources@HODAssoc.org
Community Development Board Member
Deborah Dybdahl
BIO COMING SOON!
Scientific Liaison Board Member
Eleni Lagos
BIO COMING SOON!
Our External Medical Advisory Board
Dr. Katelyn Bird, MD
Dr. K. Bird is a board-certified Neurologist and Movement Disorder Specialist at Boston Medical Center. Dr Katelyn Bird obtained her undergraduate degree in Biological Sciences with a Neuroscience Specialization at the University of Chicago before completing her Doctor of Medicine at Indiana University School of Medicine.
She completed her internship and neurology residency at Boston Medical Center, serving as chief resident in her final year. She completed a Movement Disorder Fellowship at Boston Medical Center before joining as a full-time faculty member in fall 2020. Clinically, she specializes in the diagnosis and management of individuals who have Parkinson’s disease (PD), atypical Parkinson’s disease, tremor, Huntington’s disease, dystonia, ataxia, and other movement disorders. Our doctor is experienced in Deep Brain Stimulation for Movement Disorders and is skilled in the use of botulinum toxin injections for movement disorders and migraine.
Dr. Bird serves as the Associate Director for the Neurology Clerkship and is a member of the Academy of Medical Educators for Boston University School of Medicine. The doctor is the Faculty Advisor for the Parkinson’s Partners program and the Student Interest Group in Neurology. Dr. Bird serves as the lead Field Specific Advisor in Neurology and is the course co-director for Neurology Health Equity Rounds. She has participated in the APDA Parkinson’s Good Start Program and the FIRE-UP PD project. She is currently pursuing a Masters Degree in Health Professions Education through Boston University. Her research interests chiefly include quality improvement, healthcare disparities, and medical education. She is presently serving as the site PI for TOPAZ. She is a member of AAN and MDS.
Read Dr. Bird’s published work here:
Steve Cairns, BSc
Find Steve’s ‘Movement Project’ Work here:
Steve is a FMS & SFMA Qualified Brain Injury Movement Rehabilitation Specialist. In 2017 , he suffered catastrophic stroke as a result of a hemorrhaging brainstem cavernoma which then required 10.5 hours of surgery to remove. Consequently, Steve lost all movement skills and his prognosis was a 2-3 year recovery with permanent deficits and a possible need for a walking adjunct. He signed himself out of hospital, straightaway, in a wheelchair. Surprisingly, he rehabbed himself and reached his prognosis targets inside 10 weeks producing results his internationally renown surgeon (Mr. Mario Teo) recorded as both “Amazing and contrary to conventional wisdom”. Steve has been managing the recovery of other brain injury patients since 2019. He has twice had abstracts and presentations accepted by the World Congress of Neuro Rehabilitation (2020, 2022). He founded and runs “The Movement Project” and also presents on Movement Rehabilitation in both the UK & United States.
https://www.youtube.com/@resetrehab7519
Listen to Steve discuss concurrently his recovery and work on the ‘Movement Project’ Here:
Brittany Halliday, M.S., CCC-SLP
Brittany Halladay is a bilingual clinical fellow speech-language pathologist. She recently graduated from Pacific University in Oregon. Henceforth, she is passionate about serving and connecting with underrepresented and diverse populations. Her experience chiefly includes working in the school and inpatient rehabilitation settings. Her clinical interests explicitly include cognition, aphasia, dysphagia, dysarthria, and language/speech-sound development in children. Hence, she is excited to be joining the HODA board and serving this community.
Read Brittany’s published work here:
Dr. Pawel Tacik, MD PhD.
Dr. Tacik is currently employed as a consultant neurologist in the Department of Neurodegenerative Diseases and Geriatric Psychiatry at the University of Bonn Medical Center in Germany. He graduated in medicine from the Wroclaw Medical University in Poland, where he received his MD. Following graduation, our doctor completed his neurology residency at the Hannover Medical School in Hannover in Germany.
He subsequently received his doctorate from the University of Halle-Wittenberg in Halle, Germany and his postdoctoral degree with lecturing qualification from the the Hannover Medical School in Hannover in Germany. He worked also as a visiting postdoctoral research fellow in the Departments of Neurology and Neuroscience at the Mayo Clinic in Jacksonville, Florida, USA. Dr. Tacik has received several research grants and has served as a primary investigator and sub-investigator on various clinical trials. He has also been working as a reviewer for a number of international neurology journals. Dr. Tacik is a member of several medical associations, i.a. IAPRD and DGN. He speaks four languages fluently (Polish, German, English, and Spanish).
Read some of Dr. Tacik’s published works here:
https://pubmed.ncbi.nlm.nih.gov/27372241/
https://pubmed.ncbi.nlm.nih.gov/25099510/
https://pubmed.ncbi.nlm.nih.gov/24384991
Dr. Philip Tipton, MD
Dr. Philip Tipton graduated summa cum laude from the University of Tennessee in 2009 with Bachelor of Science in “Honors Biochemistry, Cellular & Molecular Biology” followed by a post-baccalaureate fellowship at the NIH studying synaptic transmission.
In 2015, he obtained his medical degree (M.D.) from East Tennessee State University after which he completed an Adult Neurology Residency and Behavioral Neurology Fellowship at the Mayo Clinic in Jacksonville, FL (MCF). Additionally, In 2021, he completed a Movement Disorders Fellowship at the Mayo Clinic in Rochester, MN and is currently an Assistant Professor at MCF. Dr. Tipton’s research interests include parkinsonian neurodegenerative diseases, e.g., Parkinson’s disease, Dementia with Lewy bodies, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, etc.. Dr. Tipton leverages multi-modal approaches, e.g., neurophysiology, gait analysis, to identify new clincopathologic correlates of disease. Through rich international collaborative networks, Dr. Tipton also studies clinco-genetic relationships of these diseases and others.
Recently, Dr. Tipton and colleagues demonstrated the first disease-modifying treatment for CSF1R-related leukoencephalopathy with hematopoietic stem cell transplantation in (PMID: 34329526). Presently, Dr. Tipton is focused on identifying gait perturbations that provide insights into neurodegenerative diseases that may be utilized to facilitate diagnosis, monitor disease progression, and measure treatment responses.
Read some of Dr. Tipton’s published work here:
https://pubmed.ncbi.nlm.nih.gov/38054275/
https://pubmed.ncbi.nlm.nih.gov/37606550/
https://pubmed.ncbi.nlm.nih.gov/36106922/
Our External Scientific Advisory Board
Dr. Vikram Shakkottai, MD, PhD
Dr. Shakkottai obtained his medical degree at the Christian Medical College, Vellore, India, and his PhD at the University of California, Irvine. He received Neurology Residency training at Washington University/Barnes-Jewish hospital, and was a fellow in Movement Disorders at the University of Michigan. Then, he joined the full-time faculty at University of Michigan in 2010. Finally, he moved to UT Southwestern Medical Center in 2021 as the Dedman Family Distinguished Chair in Neurologic Disease and Vice-Chair for Basic Research in the Department of Neurology. In addition, he directs the Ataxia Clinic at UT Southwestern Medical Center.
The long-term goal of Dr. Shakkottai’s clinical and laboratory research is to determine whether alterations in neuronal physiology contribute to motor dysfunction and to translate preclinical murine model research to human clinical trials for cerebellar ataxia. Work in Dr. Shakkottai’s laboratory has explicitly identified dysfunction in the cerebellum and inferior olivary nucleus in murine models of ataxia, with ion channel transcriptional dysregulation as a root cause of neuronal dysfunction in disease. Targeting ion channels that regulate intrinsic neuronal excitability are key targets for therapy in degenerative disorders of the cerebellar circuit.
See Dr. Shakkottai’s webinar All About Hypertrophic Olivary Degeneration HERE!
Dr. Saravanan Thangarajan, MDS, MBA, FICOI, FAD
Dr. Saravanan Thangarajan, MDS, MBA, serves as a Global Health Research Scholar at Harvard Medical School, actively collaborating with the Ministry of Health in Vietnam to integrate climate science into medical education. He earned his Master of Dental Surgery from the Sri Ramachandra Institute of Higher Education and his MBA in Healthcare Administration from Dr. M.G.R. Educational & Research Institute, graduating with high honors.
As Tamil Nadu State Public Health Consultant Head in India, Dr. Thangarajan managed critical health initiatives and leveraged digital health technologies to sustain healthcare delivery during the COVID-19 pandemic. As a matter of fact, his work has garnered extensive recognition, including numerous awards. It has been prominently featured in various media outlets, including published papers, YouTube features, and interviews, underscoring his significant contributions to global health.
Dr. Thangarajan is a recognized editorial reviewer for several medical journals and a sought-after guest speaker at national and international conferences and venues, advocating particularly for innovative health policies. As an active member of multiple international health organizations, he pushes for data-driven health policies and the global development of inclusive healthcare systems. His dedication extends to addressing the needs of underrepresented and marginalized communities. On the whole of his career, he has secured several grants and funding for his research, enhancing his ability to contribute to significant advancements in medical science and public health. Dr. Thangarajan is deeply honored to serve in a capacity that aligns with his lifelong commitment to enhancing health outcomes, advancing medical understanding, and advocating for rare health conditions.