Washington’s 18th District state Rep. Stephanie McClintock met with and presented local Brush Prairie resident Sandra Sermone with a House resolution in her honor, recently.
“The resolution acknowledges Sermone’s years of volunteer work, wherein she leads efforts to aid those who suffer from a rare genetic condition called ADNP Syndrome, a complex neuro-developmental disorder estimated to be one of the leading single gene causes of Autism,” a release by the ADNP Foundation stated.
ADNP syndrome is a disorder caused by a non-hereditary change in the activity-dependent neuroprotective protein (ADNP), which is a crucial brain gene, the release stated.
“I am honored that my work is supporting efforts that directly impact our community,” said Sermone in the release. “I extend my deepest gratitude to Rep. McClintock and the members of the House who voted for this incredible recognition and am thankful for the awareness this brings to ADNP Syndrome, which is a devastating and degenerative brain disease that one of my twin sons have. Importantly, I really hope to expand my efforts by working more in my community educating patients, parents and medical professionals about the genetic link to autism and possible opportunities that could help the community as a whole.”
Sermone founded the ADNP Kids Research Foundation, a 100% volunteer-run Washington state nonprofit organization supporting research and advocacy for children and families impacted by ADNP Syndrome, the release stated. Her organization has raised more than $2 million for research and is the highest single contributor to ADNP syndrome research worldwide, according to the release.
Sermone’s son Tony was the first person in the US, 10th in the world, diagnosed with this condition. When diagnosed, nothing existed to help her son, according to the release.
In addition to autism and global neurodevelopmental delays, ADNP can affect the neurological, cardiovascular, speech, endocrine, immune, musculoskeletal, gastrointestinal, kidney, urinary, and respiratory systems, as well as muscle tone, vision, hearing, growth, feeding and sleep, according to the release.
