6th Annual LGS Foundation Walk ‘n’ Wheel to Take Place June 5

 

According to a recent news release, the Lennox-Gastaut Syndrome (LGS) Foundation shared that its 6th Annual Walk ‘n’ Wheel event will take place on June 5th, 2021. The event is designed not only to raise awareness about LGS, but to help raise funds to spur future medical research. Because the Walk ‘n’ Wheel is fully virtual, anyone around the globe can participate!

6th Annual Walk ‘n’ Wheel

According to the Walk ‘n’ Wheel webpage:

Inspired by those impacted by Lennox-Gastaut Syndrome, our hope with the virtual Walk ‘n’ Wheel is to increase awareness and funding for scientific research to improve the lives of those affected by this devastating disorder. Join dozens of other LGS families as we come together virtually, while we’re apart, to support the LGS Foundation’s mission at one of our most enjoyable events of the year!

Want to see how you can help the LGS Foundation “Step Towards a Cure, Together?” To participate, you can register here. Once registered, you can:

  • Set up a personal fundraising page. On this page, pledge how many steps you will take for LGS. Remember – every step counts!
  • Share your page with your friends, family, coworkers, or anyone else you think might be interested.
  • Participate on June 5th by walking, climbing, biking, or any other action.

Once registered, you will also receive protective sunscreen, a bandana, a Walk ‘n’ Wheel hat, and a portable Bluetooth speaker to jazz up your walk!

Don’t forget to also share on social media. Some of the hashtags associated with Walk ‘n’ Wheel include:

  • #WalkForLGS
  • #2021walkforLGS
  • #LGSsteppingtowardsacure

All funds raised during the event will go towards helping the LGS Foundation and its initiatives in advancing critical research within this sphere.

Lennox-Gastaut Syndrome (LGS)

Altogether, Lennox-Gastaut syndrome (LGS) is a progressive and rare form of epilepsy characterized by severe seizures which occur early in life. Causes vary. For example, premature birth, encephalitis or meningitis, brain injury during pregnancy or birth, low birth weight, and low oxygen levels can all cause LGS. However, around 25% of patients have no known cause for their symptoms.

LGS makes up around 5% of all childhood epilepsy cases. Typically, symptoms appear between ages 2-6. Those with LGS may have varied seizures, including absence, tonic, or atonic seizures. Absence seizures include prolonged epileptic activity. During these seizures, patients may blink rapidly, nod their head, or blankly stare. Atonic seizures cause a sudden loss of muscle tone, resulting in falling or collapsing. Finally, tonic seizures cause muscle stiffening. In many cases, tonic seizures occur during sleep. Patients with LGS often do not respond well to conventional anti-seizure medication.

Additional symptoms and seizures include:

  • Intellectual and learning disabilities
  • Nonconvulsive status epilepticus (SE)
  • Myoclonic seizures
    • Note: These seizures present in abnormal, stiff, or “jerky” movements.
  • Tonic-clonic seizures
    • Note: In this form, patients present with limb stiffening and jerking. Typically, tonic-clonic seizures can last for a few minutes.
  • Developmental delays
  • Frequent falls
    • Note: Additionally, patients may experience injuries or pain related to falling.
  • Psychomotor regression (the loss of previously acquired skills)
  • Hyperactivity
  • Irritability
    • Note: Beyond hyperactivity and irritability, those with LGS may develop behavioral problems. In severe cases, these problems may worsen into psychosis.
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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