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 from her dream job in 2022 due to the disabling effects of HOD. In 2017, after struggling for several weeks with constant migraine headaches, she was diagnosed with a rare Cerebral Cavernous Malformation on the 4th ventricle of her brain. After undergoing brain surgery to excise the malformation in February of 2021, she developed HOD, 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. She officially created the patient organization on October 5, 2021. Christina works tirelessly with her Board of Directors and her External Medical Advisory Board to promote awareness of HOD, educate the patient community, and work towards funding research into the causes of the disease. Christina’s focus is to never have one more person diagnosed with HOD to feel as lost and hopeless as she once felt. In her spare time, she enjoys reading, writing, and learning more about the brain and brain injury. She also 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: https://www.brainandlife.org/articles/finding-hope-after-a-rare-diagnosis
http://tbihopeandinspiration.com/June2022.pdf
Listen to Podcasts featuring Christina here:
https://open.spotify.com/episode/3ilCea3rtf50R2XucRDx51?si=rFou8vlEQE6baiSKc5MsWg
https://open.spotify.com/episode/1cwuxUSTFq4MAH08m8MLyG?si=YkmGGsAlS0miHveP8JevOw
https://open.spotify.com/episode/4eDkDY0ixaTLVvIJpFpGEm?si=javBjA7vSUGvO0a-Tj_Img
https://open.spotify.com/episode/0ApahnzaPMtTtj0o3JF9Lw?si=Z9uymIVETwabudgzxlqd8g
Vice President & Founding Member
Rebecca Munroe
Rebecca has 20+ years experience working in the furniture industry as a District Operations Manager primarily overseeing retail store, warehouse operations, and customer service. When her sister Christina was diagnosed with CCM and subsequently HOD, we searched for anything and everything on prognosis and treatment only to discover there isn’t one. Being a part of HODA is an honor, an opportunity to find answers and maybe a treatment while supporting the HOD community. Rebecca enjoys her marriage of 11 years and together 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:
https://open.spotify.com/episode/12CNtIIxjMKdw65U4EwcK8?si=yIlvNA0QQZ2EtmRCN8QUlg
Operations Board Member
Megan Loden
Megan became a passionate rare disease patient and caregiver advocate when her identical twins were diagnosed with Familial CCM in 2020. She is well-versed in all things coffee, sarcasm, and Real Housewives of Beverly Hills. Megan advocates in the rare disease caregiver space whenever given the opportunity. When she’s not busy with her advocacy or her 3 kids, she can be found on her blog at www.meganloden.com writing about the realities of raising two rare kiddos and keeping her life together(ish). Email Megan directly Operations@HODAssoc.org
Scientific Liaison Board Member
Kim Schaefer
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 Science@HODAssoc.org
Secretary
Christine Hackenbruck
Christine Hackenbruck 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 is passionate about connecting rare families with one another. She has developed a knack for webinar production and can’t wait to assist HODA with future projects. Email Christine directly at secretary@hodassoc.org
Our External Medical Advisory Board
Dr. Katelyn Bird, MD
Dr. Katelyn Bird is a board-certified Neurologist and Movement Disorder Specialist at Boston Medical Center. She 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. She is experienced in Deep Brain Stimulation for Movement Disorders and is skilled in the use of botulinum toxin injections for movement disorders and migraine. She 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. She is the Faculty Advisor for the Parkinson’s Partners program and the Student Interest Group in Neurology. She 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 include quality improvement, healthcare disparities, and medical education. She is currently 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
Steve is a FMS & SFMA Qualified Brain Injury Movement Rehabilitation Specialist. In 2017 suffered catastrophic stroke as a result of a hemorrhaging brainstem cavernoma which then required 10.5 hours of surgery to remove. 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 in a wheelchair, 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.
Find Steve’s ‘Movement Project’ Work here:
https://www.youtube.com/@resetrehab7519
Listen to Steve discuss his recovery and work on the ‘Movement Project’ Here:
https://open.spotify.com/episode/1FYMSr3L5jaMakCPWJ3MrI?si=IFsx8r3GTfWbJBUR9edTbQ
https://open.spotify.com/episode/1FYMSr3L5jaMakCPWJ3MrI?si=IFsx8r3GTfWbJBUR9edTbQ
https://open.spotify.com/episode/0RKZBR9UWDbT0bEyFu01Zq?si=67StAOFcSVKIaeEDWdrKwg
Brittany Halliday, M.S., CCC-SLP
Brittany Halladay is a bilingual clinical fellow speech-language pathologist. She recently graduated from Pacific University in Oregon. She is passionate about serving and connecting with underrepresented and diverse populations. Her experience includes working in the school and inpatient rehabilitation settings. Her clinical interests include cognition, aphasia, dysphagia, dysarthria, and language/speech-sound development in children. 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. Pawel 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. Dr. Tacik graduated in medicine from the Wroclaw Medical University in Poland, where he received his MD. He completed his neurology residency at the Hannover Medical School in Hannover in Germany. He went on to receive 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). 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). Currently, 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/