Patient Support Group
Our patient support group is led by our President, Christina Coates. The group meets virtually over Zoom on the 3rd Saturday of each month at 9am Arizona time. Why do we specifiy “Arizona Time”? Because Arizona is one of only two states in the Unites States that does not abide by Daylight Savings time. This tends to make the biannual time change even more confusing. Reserve your spot today! Patient Support Registration
Care Giver/Family Support Group
So someone you love has been diagnosed with HOD. What now? Our best advice is to join our care giver and family group. This group excludes patients, so partcipants are free to discuss anything that they may not feel comfortable speaking about with patients present. Our group is led by a fellow care giver who understands what you are experiencing, and can lend an empathetic ear. This group also knows how to laugh and celebrate small victories. Why not take an hour for yourself and do some of that elusive ‘self care’? Reserve your spot today! Care Giver Support Registration
Come On, Get Happy!
Who says that we can’t have our own Happy Hour? Join us every quarter for a virtual HOD Happy Hour! What exactly does that mean? We are so glad that you asked! Our virtual HOD Happy Hour is open to anyone who’s life is touched by HOD. We invite you to spend an hour each quarter in community with us doing what makes you happy. Do you enjoy painting? Why not paint and chat? How about sipping on a cocktail or a mocktail? Why not join us while you are enjoying your beverage of choice? Maybe you are more of a puzzle builder. We bet you can do that and socialize with your HOD friends at the same time! Keep an eye on our Social channels and the interactive calendar below to register for the next HOD Happy Hour!
Educational Webinars
When there is a degenerative brain disease at play, it is important to keep learning and keep your mind sharp. That is one reason why HODA is committed to offer quarterly webinars. Our past events have included a discussion with our Patient Registry provider CoRDS, an informative discussion around Speech Therapy with HODA’s External Medical Advisory Board Member Brittany Halliday, CF-SLP, and an interactive webinar with HODA External Medical Advisory Moard Member Steve Cairns, BSc regarding Movement Recovery post stroke. You can watch our previous webinars on our YouTube channel Be sure to Like and Subscribe while you are catching up! Watch our Social channels and the interactive calendar below for upcoming webinars and registration information. Do you have a webinar topic that you would like to see in the future? Drop us a line at ContactUs@HODAssoc.org!
2024 Harvard Rare Disease Hackathon
Did you know that HODA was selected to participate in the inaugural Harvard Rare Disease Hackathon? It’s true! you can check it out here. HODA’s very own Dr. Katelyn Bird served as a judge in the Hackathon, and we couldn’t be more proud! HOD Patient Brad Asher spoke virtually to the hackers to share his story, while HOD Caregiver Adriana Carolina shared the story of her daughter, Angelica, and their journey with HOD. Though our hacking team did not come away as the winners, their idea for an app that recognizes Ataxic speech and helps the patient to communicate more clearly was a true winner in our view!
Save The Date! October 5th is HOD Awareness Day
We celebrate HOD Awareness Day annually on October 5th. What is the significance of October 5th? That is the day that HODA was officially born. What better way to celebrate our birthday than to globally recognize the disease that we hope to make history? Won’t you join us this year in spreading awareness of our HOD Heroes? You can host a fundraiser! You could run, stroll, or roll a 5k in your favorite HOD Hero’s honor! You could post awareness facts on social media! There are so many ways to celebrate and spread awareness, and it doesn’t need to be complicated. Check out our past celebrations below!
