Hope, in its essence, is a passive emotion. It's the expectation that someone else - researchers, doctors, or even fate - will make a change. Please not I do realize doctors and researchers, and regulatory are the key to the cure, so are we. While hope can provide comfort, it can also lead to a sense of helplessness, leaving us waiting for a miracle rather than taking action.
But what if we shifted our mindset from hope to belief?
Belief is different. Belief brings urgency. It compels us to stand up, to focus together on an outcome. Most importantly, belief promotes action.
In the context of HD, this shift from hope to belief can be transformative. When we believe in the possibility of better treatments, improved quality of life, or even a cure, we're more likely to:
Participate in clinical trials
Advocate for increased research funding
Educate and fight for a greater understanding with regulatory bodies and decision makers
Engage in our own care and treatment decisions
Support and educate others in the HD community
This isn't to say that hope doesn't have its place. Hope can be a comfort in dark times, a light that keeps us going. But belief - that's our catalyst for change.
When we believe, we don't just sit back and wait for others to make a difference. We become part of the solution. We join together, combining our focus and our efforts towards a common goal, a world free of Huntington’s disease.
For those of us in the HD community, this might mean pushing for earlier interventions, advocating for patient-centered approaches to care, or challenging the status quo in regulatory processes that don't serve our needs or slows down the process of access to life changing and even lifesaving medications
Belief also acknowledges the power of our community voice as a whole. It recognizes that while individual efforts are important, it's our combined focus and action that will truly move the needle in HD research and care.
So, while we may hope for a better future, let's also believe in our power to create that future. Let's stand up, take action, and work together with urgency towards the outcomes we want to see.
Remember, every step forward, no matter how small, is progress. And with a shared belief in what's possible, there's no limit to what we can achieve.
What do you believe is possible in the fight against HD? And more importantly, what actions will you take to turn that belief into reality? Let's start conversation's and inspire each other to move from hope to belief, from passive waiting to active doing.
When we have opportunities to participate in regulatory discussions, fill out FDA dockets, be a part of a natural history or observational study, write a letter to your local government agencies, participate in interviews, join or start a support group, take surveys about our lived experience, participate or host an HD event, join an online group if you are unable to leave your home, join the online options of participating in regulatory conversations, participate in an advisory board, participate in a clinical trial if you qualify and are comfortable, write an article about HD, talk to news media sources, and so much more, let's not wait and hope others will do it, let's stand up and belief it is impactive to be part of the change and take action. Your voice and your actions matter.
Together, we can write a new chapter in the story of Huntington's disease - one of belief, action, and progress.