Help a Huntington’s Disease Patient Advocate in Need

Antonio Maltese is a young man living in Virginia. His family has also been devastated by the hereditary rare illness called Huntington’s disease. In fact, he was diagnosed with the illness himself early in life. The challenges of living with Huntington’s disease has motivated Antonio to work tirelessly as a patient advocate. In fact, we met with Antonio last month in February at Rare Disease Week in Washington, DC.

About Huntington’s Disease

Huntington’s disease is a heritable disorder that causes brain cells to die. This is a long term, progressive, and ultimately lethal disease that causes severe debilitation over time. The disease is caused by a genetic mutation that affects the HTT gene. It normally appears between 30 and 50 years, but in rare cases it can occur before age 20. Symptoms of Huntington’s may first appear as subtle mood and behavioral changes and loss of coordination. Other symptoms include random movements called chorea, abnormal posture, sleep issues, trouble chewing, swallowing, and speaking, dementia, anxiety, depression, and impulsivity. Nine percent of deaths are the result of suicide. Treatment for Huntington’s disease is symptomatic, with no cure or disease altering therapies available. Most patients die around 15 to 20 years after their diagnosis. To learn more about Huntington’s disease, click here.

Antonio’s Story and the Huntington’s Initiative

Antonio’s work as an advocate has also included establishing the Huntington’s Initiative, which is a website that aims to help spread awareness for Huntington’s disease. Antonio is determined in his goal to both spread awareness and ultimately find a cure for the illness. He says that every patient deserves a fighting chance. The advent of gene editing technologies such as CRISPR/Cas9 have the potential to dramatically change the landscape for rare genetic disorders, including Huntington’s disease.

Unfortunately, times have been difficult for Antonio recently. A few months ago, a fire in his apartment building led to the destruction of his studio. With no other options, he has had to move back to Charlottesville and has needed to take medical leave from VCU. Antonio has applied for disability, but is stuck waiting for months in order to get a verdict. In the meantime, he is left low on funds to pay for basic needs.

If you can support our friend and patient advocate Antonio, please click here.

If you would like to learn more about the Huntington’s Initiative, click here

 


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