ADNP Kids Research Foundation
  • About
    • What is ADNP
    • Our Story
    • Our Mission & Team
    • 501(c)(3) Determination
    • IRS 990 Yearly Filings, Articles and Bylaws
    • Inclusivity Statement
  • RESEARCH
    • ADNP Patient Registry & Natural History
    • Research Projects 2023
    • Research Strategy
    • Ketamine Trial
    • Ketamine Trial Publication
    • Ketamine Update
    • NET STUDY
    • publications
  • Welcome Newly Diagnosed
    • Contact Registry
    • ADNP Family Conference >
      • HIGHLIGHTS- ADNP Syndrome Family Conference
      • TSA Travel Help
      • #CureADNP
    • Understanding the Basics >
      • Understanding Genetics
      • Understanding Gene Therapy
      • Understanding Drug Screening
  • 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
  • contact us

Our Mission.  Our Vision.  Our Goal



OUR MISSION
To advocate and advance the awareness and understanding of ADNP Syndrome / Helsmoortel Van Der Aa Syndrome (ADNPHVS) by supporting research for treatments and drug development, increasing awareness and scientific understanding, promoting individualized specialty care and protocol, supporting families and providing information to help all individuals with ADNP Syndrome realize their full potential and have a better quality of life.
​
OUR VISION
The vision of the ADNP Kids Research Foundation is to make a positive change in the ADNP community, to engage, inspire and empower families, physicians, educators and others, to push for more scientific and therapeutic research, and improve the lives of everyone affected by ADNP.

OUR GOAL
Research is at the heart of our mission. It is our goal to find new and effective treatments as quickly as possible.
​To support projects that lead to additional research support from government agencies, pharmaceutical companies and other funding sources. To create protocol for current medical best-care practices. To gain a better understanding of the disease. 


OUR TEAM 
Sandra Bedrosian Sermone - CEO, Board President
Drish Asher - Board Vice President
Genie Egerton-Warburton - Board Chairman 
Tim Mosier - Board Treasurer
Debbie Abraham - Board Secretary 

We are currently updating our Medical and Scientific Advisory Board during our Scientific Roundtable.  
Please contact the Board Chairman if you have any questions.
ADNP Kids Research Foundation
is a Washington State 501(c)3 non-profit organization incorporated on May 26, 2016
UBI #603-622-515
EIN #30-0964243

Contact us at ADMIN@adnpfoundation.org
Picture
Privacy Policy  |  Terms of Services  |  Other Policies  
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 & Team
    • 501(c)(3) Determination
    • IRS 990 Yearly Filings, Articles and Bylaws
    • Inclusivity Statement
  • RESEARCH
    • ADNP Patient Registry & Natural History
    • Research Projects 2023
    • Research Strategy
    • Ketamine Trial
    • Ketamine Trial Publication
    • Ketamine Update
    • NET STUDY
    • publications
  • Welcome Newly Diagnosed
    • Contact Registry
    • ADNP Family Conference >
      • HIGHLIGHTS- ADNP Syndrome Family Conference
      • TSA Travel Help
      • #CureADNP
    • Understanding the Basics >
      • Understanding Genetics
      • Understanding Gene Therapy
      • Understanding Drug Screening
  • 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
  • contact us