September 12: Virtual Dystonia Zoo Day

 

Do you want to make a difference in patient advocacy and rare disease education? Well, here’s your chance. Every year, the Dystonia Medical Research Foundation (DMRF) holds a local zoo walk to raise awareness. However, because of COVID-19, DMRF moved this year’s day online. The Virtual Dystonia Zoo Day will take place on September 12, 2020 at 11:00am CT. Learn more or sign up for free here.

Virtual Zoo Day

Since 1976, the DMRF has been working to inform medical research, support patients and their families, and raise awareness about this disorder. Now, they share:

By participating, you’ll connect with others in the dystonia community and bring visibility to dystonia nationwide. Your support will ensure DMRF continues to offer programs and resources to individuals and families impacted by dystonia and advance urgently-needed medical research.

Because the event takes place fully online, anyone with a computer, cell phone, or other device can join in. The event takes place at 11:00am CT with a live kick-off. However, there will be multiple sessions and “events” all day long, including:

  • A discussion with a zookeeper
  • Yoga and mindfulness lessons
  • Children’s activities
  • A Q&A session with movement disorder experts
  • A behind-the-scenes examination of what medical researchers do

There are also multiple ways to raise money, including purchasing a sponsorship, buying a t-shirt, or buying a family pack with masks, t-shirts, and activity kits! 100% of donations, up to a total of $50,000, will be matched.

#LetsZOOthis together for dystonia research!

Read the source article here.

Dystonia

It’s difficult to say exactly what causes dystonia, a chronic movement disorder that causes spontaneous muscle contractions. While some patients inherit this disorder, others acquire it as the result of a separate condition. However, in both cases, researchers believe dystonia originates from the brain’s inability to handle movement-related messaging.

Overall, there are three common subtypes:

  • Focal, where only one area of the body is affected. For example, patients with cervical dystonia will experience muscle contractions in the neck muscle.
  • Generalized, where most or all of the body is affected. For example, patients may experience muscle contractions with begin in the limbs and spread, causing movement difficulty throughout the body.
  • Segmental, where two or more neighboring areas of the body (such as eyes and mouth) are affected.

Symptoms vary in severity, location, and frequency. They include:

  • Muscle cramping
  • Involuntary muscle spasms
  • Difficulties with speaking or writing
  • Foot cramps, neck pulling, and eyelid spasms
  • Exhaustion

Learn more about dystonia here.

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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