May 11: Kick of HD Awareness Month with a Live Storytelling Event!

It’s finally May – and you know what that means! That’s right, this month is Huntington’s disease (HD) Awareness Month. The theme for this month’s HD Awareness Month is #LetsTalkAboutHD. Through videos or written stories, those with Huntington’s disease, and their families, can amplify the discussion around the impact of HD. 

To help raise awareness, the Northeast Region of the Huntington’s Disease Society of America (HDSA) shared that, in conjunction with the Stellar Story Company, it will be hosting a live storytelling event on Wednesday, May 11, 2022 at 7:00pm ET. The name of the event is “What Huntington’s Tells Us About Living,” and it is sponsored by uniQure. Register now

Storytelling for HD Awareness Month

So what will be going down at this fun, live storytelling event? Well, this showcase, taking place at Regent Theatre in Arlington, MA, provides a space for five individuals to share their unique experiences with Huntington’s disease. These span patients, caregivers, healthcare providers, and those who carry the gene. Additionally, the event will be hosted by award-winning journalist Jackie MacMullen. 

Our genetics are predetermined, but the way we approach life doesn’t have to be. During this event, you will hear personal perspectives, fears, and dreams for the future.

Tickets for the general public cost $25. For families impacted by Huntington’s disease, tickets cost $10. To get a code for your discounted ticket, please email Virginia Goolkasian at [email protected]. You may also call 978-905-5588 to learn more. Proceeds from the ticket sales will support the HDSA mission and work to make a change within the Huntington’s disease community. 

Don’t wait; register today and support HD Awareness Month. You can purchase tickets here

About Huntington’s Disease (HD)

Also called Huntington’s chorea, Huntington’s disease (HD) is a rare and progressive neurological disorder caused by HTT gene mutations. Normally, this gene encodes for the production of the huntingtin protein. However, HTT mutations cause abnormally long and toxic chains of huntingtin protein to accumulate, break down, and bind to neurons, causing loss of neuronal function. As a result, patients experience a loss of physical and mental capabilities. An estimated 3-7 out of every 100,000 individuals has Huntington’s disease. In many cases, the disease manifests in one’s 30s-40s, though in rare cases, it can occur in juvenile patients. Symptoms can include:

  • Uncontrolled jerking or twitching movements (chorea)
  • Depression, impulsivity, anxiety, and/or irritability (also known as changes in behavior or personality)
  • Dystonia
  • Difficulty speaking or swallowing
  • Poor balance and coordination
  • Slow or abnormal eye movements
  • Head jerks, shoulder shrugs, or other similar movements
  • Difficulty learning or retaining new information
  • Unintended weight loss
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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