Jenna's Magical Adventures

     May is an important month because besides being my sister’s birthday month, it is also Huntington’s disease awareness month! Huntington’s disease (also referred to as HD) is a genetic neurodegenerative disease. It is caused by a mutation in a person’s DNA that causes a repeat in the huntingtin gene. This repeat causes a break down of cells in the brain. Every child born to parent with Huntington’s has a 50% chance of inheriting it as well. Huntington’s disease is considered a rare disease because it only affects about 0.005-0.01% of people worldwide. There are, however, many people that are living with this horrible disease undiagnosed or living at risk of it. Due to the fact that it is so rare, there is a lot that is not known about it, but a cure for Huntington’s disease could also help develop cures for many other diseases. Huntington’s disease poses many challenges for those affected and their families, which is why raising awareness, supporting research, and providing resources for those living with this disease is so important. Throughout May, I will be sharing posts about the disease and hopefully spread a little more awareness to others.

     I am starting May with this post because I feel like one of the most important reasons for Huntington’s disease awareness month is to spread awareness so we can be one step closer to a cure. Here are some ways to support Huntington’s disease awareness month and get more involved with the community.

Learn More About the Disease
      One great way to get more involved is to educate yourself on the disease. I will be doing a post that goes into more detail about Huntington’s, but a great way is to simply search the disease on a search engine or a social media site. By doing a quick search, you can get a pretty good understanding of it.

Connect With Others
     When I first decided to become more involved in the community, I searched for Facebook groups and Instagram accounts that were based on Huntington’s disease. I am so glad I did this, because I discovered so many organizations and also have connected with so many people also affected by Huntington’s. It has been so helpful in my own personal Huntington’s disease journey. My favorite Facebook group for this disease is definitely Hope for Huntington’s Disease. Everyone is so friendly and the support is incredible.

Volunteer and Support Organizations
      There are so many great Huntington’s disease organizations out there to check out and support. My favorites are the Huntington’s Disease Society of America (https://hdsa.org/), Huntington’s Disease Youth Organization (https://www.hdyo.org/), Help4HD (https://www.help4hd.org/), and HD Genetics (https://hdgenetics.com/). I will be doing a separate post about these organizations.

Spreading Awareness
     I have always thought that one of the best ways to support those affected by Huntington’s disease is to spread awareness. I believe that since it is such a rare disease, many people have not even heard about it. If more people know about Huntington’s, there will be less confusion and misunderstanding and we will also be closer to finding a cure. You can start to spread awareness but sharing posts about the disease and also supporting other Huntington’s Disease organizations.

Fundraising
     There are so many ways to raise money for Huntington’s disease. One of the easiest is probably through a birthday fundraiser on Facebook or fundraising on Instagram. I have done both and both were very easy to set up! Huntington’s Disease Society of America has many opportunities to raise money, their most popular is through their Hope Walks, annual conventions, and shop. Be sure to also see their events page, because each chapter has their own fundraising events. Help4HD also has many educational and fundraising events throughout the year. You can also start your own fundraising by signing up for a marathon or other event to raise money for Huntington’s disease.

Support and Advocate for Research and Policy
     It is so important to keep updated on all the medical research going on right now to understand Huntington’s disease more and hopefully find a cure soon. There are also many policies that have a very big and negative impact on those within the Huntington’s disease community. It is so important to let the government and policy makers know we need to give more emphasis on prioritizing Huntington’s disease research funding, access to healthcare, and support services. Access to healthcare is one that I feel particularly strong about and hope to see some changes soon.

Offer Support
      The truth is, if this is your first introduction to Huntington’s disease, you may not be sure how to support others affected by it. You should be understanding and listen to them without judging. Check in to see how they are doing and also always stand up for them.

Please email or comment any questions you may have about Huntington’s disease!