Learning about Huntington’s disease is a great way to help come to terms with being at risk. By finding the YPAHD or HDYO website, you’ve already taken a big step, because knowledge is power. Another thing a lot of people find helpful is to remember that scientists around the world are working 24 hours a day to develop treatments that will prevent the disease or slow it down.

Some people devote time to fundraising for Huntington’s disease research and care; some take part in scientific research projects that need at-risk volunteers; others find that reading about the latest research on sites like HDBuzz gives them enough information to carry on with their lives, knowing that progress is being made. Being involved in fundraising, research or both can be a powerful way to turn round, face the disease eye-to-eye and take a stand against it.

There’s no right or wrong way to spend your life if you’re at risk, and it’s perfectly OK to not want to think about Huntington’s disease at all. But getting involved has proven to be beneficial for many young people and the more people that do get involved in fundraising and research, the closer those treatments will become.