The 2024 race benefits CureSHANK!

Here are some stories, so you understand why we Run with a Heart.

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Phelan-McDermid syndrome (PMS) is a rare and highly disabling genetic disorder primarily associated with changes to the SHANK3 gene. This happens either because of a deletion toward the end of the 22nd chromosome (where SHANK3 is located) or through harmful variants (mutations) of the SHANK3 gene. 

PMS causes myriad devastating symptoms, including autism, intellectual disability, developmental regression, sleep disruption, seizures, psychiatric disturbance, hypotonia and more. Virtually no person living with PMS even comes close to being able to live independently, and most operate developmentally at the level of a toddler. 

The disorder can vary significantly in its manifestation from person to person. Most are nonverbal, but a few can talk. Some cannot even sit unassisted, while others can run. Some experience debilitating epilepsy, or require a feeding tube, or develop severe psychiatric illness such as catatonia and psychosis. All varieties of PMS are very challenging for patients and their caregivers, with the common thread that symptoms generally increase and worsen with age.

CureSHANK was founded in 2019 by three parents of children living with PMS. Its mission is to accelerate the development of cures and treatments for PMS by funding projects that help bridge the translational research gap between basic SHANK3 science and successful clinical trials for PMS. Read more about CureSHANK's work at CureSHANK.org.

Video of the runners at the 2023 Running with a Heart - Sugar Land Rotary 5 K