What is Hypertrophic Olivary Degeneration?
HOD is a rare neurological disease that eventually leads to degeneration in the inferior olivary nucleus, located in the brain stem (the structure that connects the brain to the spinal cord). The inferior olivary nucleus is the lower part of the olivary body, an oval structure located on each side of the brain stem that assists in cerebellar motor learning and functioning. HOD is considered unique because the olive initially becomes enlarged (hypertrophic) rather than atrophic (wasted). Over time, the olive goes through atrophy. There are two olives. HOD can affect one (unilateral) or both (bilateral).
Meet Ollie
Meet Ollie, the HOD Hero. Ollie was born to help our Founder, Christina Coates, cope with her new diagnosis of Hypertrophic Olivary Degeneration. Ollie wears an eye patch to control the diplopa (double vision) that the HOD has caused. Ollie understands that even though HOD causes disability, it doesn’t take away our ability to be a hero. We have the power to make HOD history! All we have to do is work together, share information, participate and be a part of this fantastic community.
Our Story
Why was HODA created?
When our founder was diagnosed with HOD, she scoured the internet trying to find any information on this daunting diagnosis, only to come up virtually empty handed. She had been volunteering for another rare brain disease group, https://www.alliancetocure.org/, which happened to have another member who also was diagnosed with HOD. This led her to a Facebook support group of 100 patients and care givers.
After the initial shock and grief of the diagnosis settled, Christina decided that if anything was going to change, a Patient Advocacy Organization had to be created. Having come from a career in accounting and finance, she was quite ignorant as to what she was signing up for. She recruited her sisters and a retired work colleague, and filed the paperwork to start HODA.
Of this original group, only her sister Rebecca remains. Together, they are always learning, growing and recruiting anyone who will listen to join the cause. Together, and with their mighty board, they are determined to find treatments and cures for this small community of HOD Heroes!
HODA Initiatives
A Commitment To Our Community, Making Progress!
Help us make HOD History! Donate today!
Creating a Reliable Mouse Model
Now that we have established our place in the rare community, HODA has set its sights on initiating basic research in to the disease. What is essential to doing this? First, we must have a reliable mouse model with which to conduct research on. This is our current funding raising priority. Our goal is to raise $60,000 USD. Will you be a Hero and help us to get to our goal? DONATE TODAY!
ICD-11 Code
Our Board Member, Kim Schaefer, is hard at work! She is working with the World Health Organization (WHO) and the Center for Disease Control (CDC) to land HOD its very own ICD-11 Code..Why does this matter to you? Great question! With the code, we can finally know just how rare HOD really is. This will lead to better patient care, better disease recognition, better research opportunities, and all around better patient outcomes.
Recruit an External Scientific Advisory Board
HODA is already dipping our toe into the shallow end of the research pool. We have a small project (with the help of Dr. Bird and student Sara Chaleshtori) that we hope to model and replicate at other large hospital systems in the future. With these strides forwards, we are in need of a Scientific Board to help guide our research studies into the future. Are you are Neuro Science Major or Graduate Student looking to make an impact in Rare disease? Submit your interest form here to join our board!
Patient Registry hosted by Sanford CoRDS
One of our first initiatives was to create a patient registry. We were encouraged to make this a priority for many reasons, most importantly because our patient registry acts as a Natural History Study for HOD. By partnering with Sanford CoRDS, our deidentified patient data is accessible (through a vetted application process) to researchers worldwide who are investigating HOD. Patients often feel helpless when they receive the diagnosis, but by participating in the registry, they are providing essential data to scientists to understand the registry. Will you help us to reach our goal? Access the registry and get started today!
Continue to Educate and Provide Resources
HODA was created out of the basic need for community. When our founder was diagnosed and desperately needed education and resources, countless internet searches provided none. Our core mission is to always provide the most up to date and accurate information to our patients and care givers. We will continue to seek out providers who have worked with HOD patients, and who are willing to learn about our disease. HODA will work with science, medicine and industry to work towards treatments and cures, as well as gain an understanding of the disease itself. HODA will work to educate patients, doctors, researchers and others involved to understand and respect the human aspect of this lifelong disease.
Latest Posts
Don’t have the time to go through all of our blog posts and articles? Catch up on our latest posts here!
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Research Threatened: Changes to Medicaid and Medicare Data Access
Researchers heavily rely on Medicaid and Medicare data to understand the experiences of individuals with autism and other developmental disabilities. However,…
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Grocery Shopping with HOD: A Survival Guide
Grocery shopping can be difficult for anyone, but especially for those with HOD and other disabilities. In fact, it can seem…
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Redefining Success: A Journey Beyond Conventional Measures
Success has always been a driving force in my life. My parents may absolutely beg to differ with this statement. However, they don’t…
Frequently Asked Question
What can I expect with this diagnosis?
Each case is different in how it presents. In a review of our patient registry data, almost all patients experience a constant dizzy-like feeling, double vision, nystagmus in one or both eyes, and some balance problems.
How long will it take for the olive(s) to degenerate?
This also is a very uniquely presenting factor to each patient. Best estimates are 5-7 year for the hypertrophy, then the atrophy cycle to complete. This is yet another reason why basic research is so important!
Will this resolve on its own?
We have not yet seen a cured case of HOD. We have seen patients gain coping skills and learn to live with HOD, but no one has been cured to our knowledge.
Can I still lead a productive life with HOD?
Absolutely yes you can! It will look different from the life that you led before, but it is still a life very much worth living. Many of our patients have found a renewed appreciation for life and all of the little things we take for granted. One key factor is finding community, and connecting with others who understand the journey.