Washington State Governor Jay Inslee Awards Rare Disease Advocate Sandra Bedrosian Sermone with the 2022 Gold Presidential Volunteer Service Award
Watch the video presentation below
Watch the video presentation below
Recorded HD video courtesy of the Office of Governor Jay Inslee
Released March 20, 2023
Clark County, Washington - Washington State Governor Jay Inslee presented Sandra Bedrosian Sermone, the founder of ADNP Kids Research Foundation, with the 2022 Gold Presidential Volunteer Service Award (PVSA) on behalf of President Joe Biden. The award recognizes Mrs. Sermone's commitment and volunteer service work in accelerating research and science for ADNP Syndrome, an ultra-rare pediatric neurological brain disorder. Mrs. Sermone is also an advocate for rare disease patients and autism-linked genetic neurodevelopmental disorders.
That majority of Mrs. Sermone's volunteer service work is with the ADNP Kids Research Foundation, a Washington based non-profit that is funding research to accelerate the development of life-saving therapeutics and a cure for ADNP syndrome, a debilitating ultra-rare genetic brain disease that her son Tony was diagnosed with when he was six years old. Sermone was nominated by New York resident Mrs. Genie Egerton-Warburton, Vice President of the ADNP Kids Research Foundation, also a mother of a child diagnosed with ADNP Syndrome.
ADNP syndrome is a debilitating genetic disorder that affects almost every system in the body, most significantly the brain and its formation, development, and function, causing disruptions to the entire neurodevelopmental domain. ADNP is one of the top single gene causes of syndromic autism and neurodevelopmental disabilities.
Mrs. Sermone recalls, “It was devastating; we had healthy twin baby boys, and at the blink of an eye, our entire lives changed forever when a few hours after they were born, things started going very wrong with Tony. First, it was his heart and brain, then everything else. We lived in and out of the hospital and spent 6 years trying to get him diagnosed, and when we did, we were told that he was the first child in the US, eleventh in the world with this 'incurable brain disease” and there was no treatment and no cure, it was a catastrophic blow. That is what started all of this, because I couldn’t just sit back and do nothing”.
She has made quite an impact during her service to her community, she dove into research and created a patient support group, registry and database, discovered the first diagnostic biomarker for ADNP syndrome and co-discovered the first possible treatment, which is currently in an FDA drug trial through the Seaver Autism Center at Mount Sinai. “She is what you would call a Citizen Scientist, like a rare disease version of Erin Brockovich” said her husband, Rich Sermone, "We are all very proud of her".
In addition to Sermone’s work with the ADNP Kids Research Foundation, she has volunteered as a Washington State legislative advocacy ambassador for the National Organization for Rare Diseases (NORD) and Autism Speaks. She has also sat as a committee advisory member with SPARK for Autism, National Council on Severe Autism, and Everylife Foundation Community Congress.
The Presidential Volunteer Service Award recognizes individuals who are committed to a high level of volunteer service, helping to solve some of the toughest challenges facing their communities and nation. In 2022, Sermone logged over 1000 volunteer hours, earning her the gold medal, presidential lapel pin, award certificate and a letter from President Biden. Washington State Governor Jay Inslee also sent a video message to present her with this award and congratulate her for her service.
Clark County, Washington - Washington State Governor Jay Inslee presented Sandra Bedrosian Sermone, the founder of ADNP Kids Research Foundation, with the 2022 Gold Presidential Volunteer Service Award (PVSA) on behalf of President Joe Biden. The award recognizes Mrs. Sermone's commitment and volunteer service work in accelerating research and science for ADNP Syndrome, an ultra-rare pediatric neurological brain disorder. Mrs. Sermone is also an advocate for rare disease patients and autism-linked genetic neurodevelopmental disorders.
That majority of Mrs. Sermone's volunteer service work is with the ADNP Kids Research Foundation, a Washington based non-profit that is funding research to accelerate the development of life-saving therapeutics and a cure for ADNP syndrome, a debilitating ultra-rare genetic brain disease that her son Tony was diagnosed with when he was six years old. Sermone was nominated by New York resident Mrs. Genie Egerton-Warburton, Vice President of the ADNP Kids Research Foundation, also a mother of a child diagnosed with ADNP Syndrome.
ADNP syndrome is a debilitating genetic disorder that affects almost every system in the body, most significantly the brain and its formation, development, and function, causing disruptions to the entire neurodevelopmental domain. ADNP is one of the top single gene causes of syndromic autism and neurodevelopmental disabilities.
Mrs. Sermone recalls, “It was devastating; we had healthy twin baby boys, and at the blink of an eye, our entire lives changed forever when a few hours after they were born, things started going very wrong with Tony. First, it was his heart and brain, then everything else. We lived in and out of the hospital and spent 6 years trying to get him diagnosed, and when we did, we were told that he was the first child in the US, eleventh in the world with this 'incurable brain disease” and there was no treatment and no cure, it was a catastrophic blow. That is what started all of this, because I couldn’t just sit back and do nothing”.
She has made quite an impact during her service to her community, she dove into research and created a patient support group, registry and database, discovered the first diagnostic biomarker for ADNP syndrome and co-discovered the first possible treatment, which is currently in an FDA drug trial through the Seaver Autism Center at Mount Sinai. “She is what you would call a Citizen Scientist, like a rare disease version of Erin Brockovich” said her husband, Rich Sermone, "We are all very proud of her".
In addition to Sermone’s work with the ADNP Kids Research Foundation, she has volunteered as a Washington State legislative advocacy ambassador for the National Organization for Rare Diseases (NORD) and Autism Speaks. She has also sat as a committee advisory member with SPARK for Autism, National Council on Severe Autism, and Everylife Foundation Community Congress.
The Presidential Volunteer Service Award recognizes individuals who are committed to a high level of volunteer service, helping to solve some of the toughest challenges facing their communities and nation. In 2022, Sermone logged over 1000 volunteer hours, earning her the gold medal, presidential lapel pin, award certificate and a letter from President Biden. Washington State Governor Jay Inslee also sent a video message to present her with this award and congratulate her for her service.
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Related National News Story: https://www.cbsnews.com/news/one-moms-mission-to-find-a-cure-for-her-sons-rare-disease/
Related National News Story: https://www.cbsnews.com/news/one-moms-mission-to-find-a-cure-for-her-sons-rare-disease/
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