ADNP Kids Research Foundation
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​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​
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. 
For additional Information, please contact admin@adnpfoundation.org
Related National News Story: 
https://www.cbsnews.com/news/one-moms-mission-to-find-a-cure-for-her-sons-rare-disease/
If you would like to donate to help the ADNP Kids Research Foundation please click here.
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All rights reserved. No portion of the content of this website may be reproduced in any manner without the written permission of the author/creator.   Any information used from this website must also have credit noted to ADNP Kids Research Foundation / www.adnpfoundation.org.
Disclosure: This page represents information known to the best of our knowledge.  Given the sensitivity and fast changing pace of research and drug development, some of the information posted on our website www.adnpfoundation.org may be inaccurate or not complete, therefor this information should be confirmed by the reader. Additionally, the medical information on this website is not substitute for personal diagnosis or medical care advise. Families and patients should consult a medically qualified clinician in all matters relating to genetic diagnosis, disease management and health. Information on ADNP research is a very fast-moving field and while the information here is believed to be the best available at the time of publication, some facts may later be updated or change. Please see additional disclosures on our PRIVACY POLICY page.
  • About
    • What is ADNP
    • Our Story
    • Our Mission
    • Our Team
    • Medical and Scientific Advisory Board
    • 501(c)(3) Determination
    • Inclusivity Statement
  • RESEARCH
    • Research Projects
    • Research Strategy
    • Ketamine Trial
    • Ketamine Trial Publication
    • Ketamine Update
    • Path to a cure
    • NET STUDY
    • publications
  • Families
    • Newly Diagnosed
    • Contact Registry
    • Understanding the Basics >
      • Understanding Genetics
      • Understanding Gene Therapy
      • Understanding Drug Screening
    • Worldwide Parent Ambassadors
    • contact us
    • ADNP Family Conference >
      • HIGHLIGHTS- ADNP Syndrome Family Conference
      • TSA Travel Help
      • #CureADNP
  • NEWS
    • NET Collaboration Study
    • Ketamine Trial Phase 2 Announcement >
      • Glimpse of Hope RDD 2020
    • Mount Sinai Launches First Drug Trial for ADNP Syndrome
    • Seaver Midtown Partnership
    • Biomarker Discovered
    • NEWS - p.Tyr719* Case Study
    • NEWS HIGHLIGHTS- ADNP Syndrome Family Conference
  • ADNP STORE
  • DONATE/SUPPORT
    • Warrior Fun Run 2022 >
      • Past Fun Run Pictures
      • Sponsorship Opportunity
    • Boston Marathon
    • Third Party Fundraising
  • About Us new