HD Awareness is Advocacy
Since May is Huntington’s Disease Awareness month, it is really important to discuss advocacy. HD awareness is a huge part of HD advocacy. We cannot fight for the rights of the HD community if people do what know anything about HD. And it is important to stress that HD awareness isn’t just about the disease itself, you can find more information here. HD awareness is also about promoting this amazing, beautiful, passionate community that has so much heart and so much love.
Why does Advocacy Matter?
When you or a loved one has a rare condition, like Huntington’s disease, it is very import to know how to advocate for yourself/your loved one because you may need to advocate every day. HD research, legal, and community improvements cannot happen without advocacy and awareness at the local, state, and federal levels. With Huntington’s disease, it is very common to have to advocate for rights and needs in all of these areas:
- Community
- Work
- Friends/family
- Medical care/doctors
- Legal planning
Knowing how to best advocate for yourself will help you navigate all of these areas. Advocating for yourself means it is your right to speak up about your condition, things that impact your well-being, and decisions being made on your behalf. You have the right to assert your own best interests.
How Do You Advocate?
Advocating is something that has to be learned and practiced, it is not always easy, and you may lose benefits and assistance for yourself/your loved one if you do not speak up. To best advocate for yourself, you need to understand your:
- Values
- What are your values?
- What matters most to you?
- Needs
- What do you need to maintain your emotional, physical, and financial well-being?
- What do you need to accomplish your tasks?
- Rights
- What are your rights and protections?
Knowing where to start is often half of the battle, watch a Disability Chat or use these 10 Steps for advocating for yourself as a guide and starting point:
Taking Action
If you want to get more involved in state and federal advocacy, then please check-out all of HDSA’s Advocacy initiatives. Every voice matters.
Contact Us
If you have questions, you can always Ask Allison!
