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Today is Pitt Hopkins Awareness Day
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Today’s Desert Messenger News is now online and being distributed all around Quartzsite!
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During the regular meeting of Quartzsite Town Council on Tuesday, September 10th, 2024 Mayor Norm Simpson read a Proclamation Declaring September 18th, 2024 as PITT HOPKINS SYNDROME AWARENESS DAY encouraging all citizens to increase awareness and understanding of Pitt Hopkins Syndrome in order to assist those individuals and families who live with this condition every day of their lives.
Pitt Hopkins Syndrome (or PTHS) is a neurodevelopmental disorder. We currently have close to 1500 families with PTHS in our global census and this number is growing every day as genetic diagnoses increase. Tcf4, the gene that causes Pitt Hopkins is implicated in various other disorders too, including Schizophrenia , Autism, Fuchs Corneal Dystrophy, and Liver Disease. The study of this important gene could have wide reaching effects for Pitt Hopkins and beyond. Even though the cause of PTHS is known, there are currently no pharmaceutical treatments available for this disorder. The Pitt Hopkins Foundation is committed to accelerating progress toward effective treatments and ultimately a cure for PTHS, by directly funding the most promising research.
During the meeting, Quartzsite Town Attorney Joe Estes thanked the council for the proclamation saying, “This syndrome affects my family” and shared a photo of his family including his stepson, Cody, who has been diagnosed with Pitt Hopkins Syndrome. He continued, “It’s amazing how the mutation of one little gene can have such an impact. We are working to bring awareness to municipalities through proclamations. Arizona has about 15 families in the state and is number one in the country in providing adult handicap care family programs.”
To learn more about Pitt Hopkins Syndrome visit https://pitthopkins.org/
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~Rain