Family Raises PKAN Awareness and Funds with Twins’ Story

The Binder family never expected that their 12-year-old twins, Grady and Jace, would be diagnosed with a rare genetic disorder. In fact, this particular disorder is so rare that it only affects one to three people out of every million: pantothenate kinase-associated neurodegeneration (PKAN). Finding themselves in this unique situation has Erin and Dustin Binder, the twins’ parents, eager to raise awareness, support their children, and work towards the best life possible for their children.

Ellie Ulbricht reports in WEAU 13 News that the Binder family recently held a fundraiser at Loopy’s Grill and Saloon. Over 2,000 people attended. Money collected during the fundraiser will be used in two ways: to assist the family with the twins’ medical expenses, as well as to contribute to PKAN research to work towards a cure. Right now, there are neither cures nor targeted treatments. Instead, treatment focuses on symptom management. 

Moving forward, the Binder family plans to continue holding fundraisers and sharing the twins’ story. If you would like to contribute to the cause, you can donate to the GoFundMe

About Pantothenate Kinase-associated Neurodegeneration (PKAN)

First described in medical literature in 1922, pantothenate kinase-associated neurodegeneration is a rare inherited neurological movement disorder. PANK2 gene mutations on chromosome 20 cause PKAN. This is inherited in an autosomal recessive pattern, meaning that those affected must inherit one defective gene from each parent. These gene mutations cause neurodegeneration and abnormal iron accumulation in certain areas of the brain such as the globus pallidus and substantia nigra. Symptoms associated with PKAN typically appear in childhood and may include:

  • Iron accumulation in the brain in an “eye of the tiger” pattern
  • Muscle rigidity and/or spasticity
  • Dysphagia (difficulty swallowing) 
  • Dystonia
  • Clumsiness
  • Abnormal gait 
  • Difficulty controlling movement 
  • Motor delays
  • Tremors
  • Poor balance
  • Progressive night blindness and peripheral vision loss
  • Abnormal speech
  • Changes in behavior or personality 
  • Dementia
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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