Thoughts on participation By Christina Coates, HODA Board President

I clearly remember the day that I decided to do my part and participate in the solution to Hypertrophic Olivary Degeneration. It was a Saturday morning, and I was the only person in my house awake. I posted a question in the HOD Patient and Family Group on Facebook, and asked if everyone agreed that we should create a patient organization. It was a resounding YES! The idea was hailed as a win for the community. I had absolutely no idea how much work was ahead of me. I also failed to realize how much encouragement we would all need to participate in making this better.

One of our first undertakings was to create the HOD Patient Registry in partnership with Sanford CoRDS. We foolishly assumed that everyone would be breaking the internet to participate. Never would I have imagined that I would spend days on end writing social posts and blogs, setting up webinars, and virtually begging people to please participate and make please make this better!

Why is it so difficult to participate?

If you think that you are alone in not participating because it is difficult, I assure you that you are not. In fact, there are very few folks that have stepped forward to do their part in making it better for all of us with HOD. I understand the allure of sitting back and letting everything happen around you. You may be surprised to learn the number of times that I have called Becky (HODA’s Vice President, my sister, and best friend) and tell her that I aimed too high, that I was foolish for thinking we could do this, and that I am ready to quit. She is adept at reminding me of the big picture and helping me to find my resolve to keep moving forward.

Forgive me, I don’t mean to come across as cynical. My aim is not to guilt or shame you into participation. I simply want to demonstrate that we don’t have the luxury of standing on the wall and sitting this out. Our disease population is so small that we need everyone to help.

A day in the life…

I wake up every morning with multiple rare and not so rare diseases, many with no treatment or cure. I push all of those symptoms out of my way and think about how I can advance HODA today. Who can I beg to donate their time and resources to put on a free webinar for our community? Is there a person who might want to volunteer for Board service? Can I convince anyone to run a Facebook fundraiser to help us meet our financial obligations this month? Knowing that I have limited time before my brain is too fatigued to function, I schedule everything between the hours of 5am to 11:30am. If I can push through it and pay for it later, I will do that.

So, how can you do your part?

It is always difficult to ask folks to pitch in and participate. However, it is clear that HODA can only do so much. For example, we can’t complete the HOD Patient Registry for you. We were able to vet the registry and create the registry for you. We made sure that you are able to pace yourself, do a few questions each day, and complete it at a tempo that works for you. But we can’t do it for you. And you can’t sit back and hope that everyone else does it, either. Because HOD is so individualized, researchers need to hear from all of us to get the full scope of how this disease works. The best way to participate is to complete the registry. That means creating your account, completing the survey, and finishing with the HOD questionnaire.

The next easiest way to participate is to host a Facebook fundraiser. HODA has always been conscientious of the limited funds our community has to support us. Which is why we ask you to leverage your social networks and ask them to support our cause. Everything we do costs money. Although we are a 100% volunteer organization at this time, we still have to pay for Zoom licenses to conduct our support groups and webinars. We have to pay to have educational materials printed and mailed. Annual government registrations, website fees, a post office box, other miscellaneous software, and the list goes on. We want to continue providing all of these services at no cost to our community, but we need your help with raising money to do that.

I am hopeful that these thoughts inspire you to jump in and help us. Whatever you choose, I will still lean on Becky to remind me that the work is worth is. We will still provide free webinars and support groups. HODA will continue to engage with other organizations, worldwide associations, and funders to make this better for us now and the future HOD community. Please work with us to Make HOD History!