Patients

You Are Not Alone!

Having a name for a collection of symptoms can be both a relief and a shock at the same time, especially for a rare disease. It is important to understand that a rare diagnosis comes with many feelings that may be frightening and foreign to you. It may feel as if your world is spinning completely out of control at first. That is a normal reaction. We have compiled the following resources to help you and your loved ones on this new journey.

“My doctor told me that this was not a death sentence. Indeed, it was not. It was a life sentence.”
Chris Coates, President and founding member, when sharing her HOD diagnosis story

You have been diagnosed with HOD. Chances are, your doctor has never heard of this disease and doesn’t know have any advice for you. Do not despair! The largest collection of HOD patients (that we are aware of) is on Facebook. You can join the group here: https://www.facebook.com/groups/1690605697672046

Support

Support Groups

We don’t need research to tell us that community support is vital for positive mental health. No one in the world can better understand what you are living with than a fellow HOD Hero. Join us on the 3rd Saturday of each month for our HOD Patient Support Group. This group is for patients only, however if you need a caregiver or trusted friend to help you to communicate, they are welcome to join with you. This is a safe space to talk about what pains us, what makes us laugh, and everything in between. You can register HERE , and HODA will email you the link every month to the meeting. We look forward to seeing you there! (Not sure what time that is in your zone? Check here.)

Our HOD Ambassador Program

Please complete the interest form below to be paired with an HOD Ambassador. This program is open to both patient and family/caregiver. Patients can expect to be assigned to an experienced patient to help navigate through the diagnosis, what testing to ask for, what is normal, what kinds of doctors to have on your medical team, life hacks, and any other HOD specific questions that you may have. This program was designed to help those who are newly diagnosed or trying to navigate some complexity that has come along in their journey.

Family/Caregivers can expect to be assigned to an experienced caregiver to help navigate through the myriad of questions that an HOD diagnosis brings, tips and tricks on how to help yourself and the patient that you care about, and all things HOD related.

HOD Happy Hour

Join us quarterly for HOD Happy Hour! This virtual hour should be used to meet up with others in the community (if you have a connection to HOD, you are welcome!) and do what makes you happy. If painting makes you happy, then you should paint and chat. If having a cocktail or a mocktail makes you happy, then you should sip and chat. If basket weaving makes you happy, then you should weave and chat. You get the idea. Who doesn’t have space in their schedule for an hour a quarter to socialize and do something that makes them happy for one hour? Watch our calendar on the EVENTS tab and our social posts for dates and times.

Resources

You may have noticed that the world is very different with double vision and/or nystagmus. This can make grocery shopping a daunting experience. Please see our guide to surviving the grocery store https://hodassoc.org/2023/12/16/grocery-shopping-with-hod-a-survival-guide/. Please check out our BLOG page for more helpful tips and tricks!

Did you know that the simplest yet most impactful way that you can help make HOD history is to join our HOD Patient Registry? It’s true! Our registry is histed by Sanford CoRDS. The good folks at CoRDS have made it easy to participate! You can do the entire registry online HERE Not comfortable with that? You can register and have a paper copy of the registry mailed to you, and complete it at your own pace. All you have to do is mail it back to them and they will handle the data entry. Still not comfortable? There is also an option to have a representative call you and complete the registry over the phone with you. Talk about accessible! Oh, and if you are worried about your personal data being shared with HODA, never fear! All data shared with us and our research teams are deidentified. CoRDS works hard to keep you anonymized and to keep your data safe. Our registry works as the HOD Natural History Study, which is an important first step into basic research of the disease in all states of progression. Please complete your registry today!

Post Mortem Brain Donation

Did you know that you can actually donate your brain to science? You can leave it in the hands of scientists who will help make sense of your HOD diagnosis and use the information to provide guidance and resources to the next generation of patients worldwide!

http://United States Brain Donation http://United Kingdom Brain Donation http://Australia Brain Donation

http://Canada Brain Donation

Your country not listed above? No problem. Start with the nearest local Medical School They may not have a program, but they can surely direct you to the right place to start the paperwork with you.

Other Organizations to Connect

Did you know that there are rare disease umbrella organizations that are available to help patients and families with various needs that they may not be able to meet on their own? Check our these great partners of HODA for more help!

Connect with Global Genes

Connect with NORD

Connect with NAF

Connect with EURODIS

Ataxia

HODA is a proud partner of the National Ataxia Foundation (NAF). Many patients also acquire an Ataxia diagnosis along with HOD. They can offer additional assistance to you if you find yourself diagnosed with Ataxia, too. https://www.ataxia.org/

Ataxia-Fact-Sheet Download

Find a Practitioner

Ask any seasoned HOD patient or care giver and they will tell you that it is tough to find a doctor that has ever heard of HOD, let alone knows how to treat it. Our patients have helped us to compile this map of providers that they have seen to help you narrow down your search for a potential provider.

Do you have a provider that belongs on this map? We are looking for practitioners who are curious and willing to learn about HOD. Nominate your Provider Here!