By Chris Coates, HOD Founder and Board President

I spent the last few days in San Diego for the 2022 Global Genes Patient Advocacy Summit.  I met many beautifully rare people, and caregivers.  I met people that work for big and little pharma, people that work for technology companies, people that run organizations that assist parents of kids with rare diseases, people from all walks (or rolls) of life, just needing acknowledgment.  I have learned that I know a lot, and very little in this space.  I have learned that the world does not consist of a dichotomy.  The world is a very grey space with more that one right and wrong choice.  

I was fortunate enough to have my sister, and Vice President of HODA, Rebecca Munroe accompany me to this conference, and by the end of the trip, she admitted that I am highly skilled at faking my way as a non-disabled person. Back at home, we are not typically together 24/7, so you can imagine that I was unable to sustain the enormous amount of energy it takes to pass for “normal” throughout the entire trip. 

This is our new normal

My sister handled this new me with grace, as if she had been taking care of me like this forever. I could feel the sadness and shock that she was experiencing as she was surrounded by the Rare Community, and perhaps finally accepting that her sister truly is a disabled woman.  She saw that when I am overwhelmed in a new situation, I struggle to find words and speak. She saw that while walking down a hall that has a strange pattern of carpet, I get dizzy and start to lean into the walls. She also saw a new me who is at home speaking to people like me now. She saw that this community believes and accepts its members 100%. There is no judgment; there is only love.

At this particular point in time, I am in the middle of applying for a 6 month leave from my employer. I have hopes that reducing the stress in my daily life will work in tandem with reducing my symptoms. I know that my employer does understand that this naughty little brain disease will fully disable me. I also believe that they secretly hope that I will beat it and come out of this and be better, stronger than ever. My reputation is one of being the exception. Unfortunately, I am already the exception. So few people are diagnosed with this disease, that we are all the exception, aren’t we? It just isn’t the exception that anyone really wants. 

Will I be able to return to work? That is something that I can’t answer. I absolutely love my job, even though it is disabling me faster. I love solving problems. I love when a client tells me that they are honored to work with me, because I have such an amazing reputation throughout their company. My poor boss wants to speak to me about my leave, but I have banned him from speaking to me about it. I just can’t talk about it yet.

How can you help?

My greatest take away from this summit is that if our community is not active and engaged, we have no chance at success. There are people and companies that would love to help and advance our mission, but without you, we are already dead in the water. I am not only speaking to the known community that comment on our Facebook page, Instagram, or our other social platforms. I am speaking directly to the people who are silent in the community. I know that you have your reasons, and I am hopeful that over time, you will be willing to make your presence known. I hope that we can build up enough trust that you see HODA as a safe organization, and that it is OK to hope for answers. I, too, feel overwhelmed frequently. This diagnosis is A LOT! Just to survive day in and day out take a tremendous amount of energy that we are already in short supply of.

So now, here we are. We have reached the point where I ask for you to invest some time and complete the patient registry questionnaire. As I heard at the summit, Ideas are great, but data is key to moving the problem forward into solutions. I mean, that is not an exact quote, but you get the gist.