ADNP Kids Research Foundation
  • Home
  • WHAT IS ADNP/HVDAS?
    • ADNP Syndrome Full Description
    • What is ADNP Syndrome/HVDAS
    • ADNP GENE
    • Phenotype/Symptoms List
  • ABOUT US
    • Board of Directors
    • Medical and Scientific Advisory Board
    • 501(c)(3) Determination
  • RESEARCH
    • publications
    • DONATE
    • Seaver Autism Center
    • TIGER
  • NEWS
    • Coronis NS FDA ODD
    • NEWS - Biomarker Discovered
    • NEWS - Autism linked biomarker
    • NEWS - p.Tyr719* Case Study
    • Year-End-2017
    • NEWS - Gozes 2017 Award
  • ADNP STORE
  • DONATE/SUPPORT
Picture

YEAR END 2017 LETTER FROM THE PRESIDENT

Thinking Back - Looking Forward


Dear Friends, It has been a very exciting and successful year for the ADNP Kids Research Foundation! In keeping with our mission statement, we have accomplished some amazing projects---here is the short list---
  • Received 501(c)3 status as an IRS accredited non profit organization.
  • Biomarker (early tooth eruption) publication made big news!
  • ​Announcement of ADNP Syndrome Study at the Seaver Center for Autism at Mount Sinai for Research and Treatment.
    • Donated over $15,000 directly through the foundation with an additional $20,000 outside of the foundation.
  • Announcement and support for advancement toward the Cornois Neurosciences clinical trial of CP201/NAP for ADNP Syndrome.
  • Continued support and enrollment of the TIGER STUDY - The Investigation of Genetic Exome Research.
  • Continued support and enrollment of the Cognitive Genetics continuation of ADNP Syndrome project based out of the University of Antwerp.
  • Participated in several events in Washington DC (Capital, NIH, FDA, Rare Disease Day) to raise awareness about ADNP.
  • ADNP Syndrome presentations given in Seattle and Philadelphia

In an effort to create a diverse Board of Directors with experience that will benefit the mission of the foundation, we have made some changes to our team. To simplify we have reduced the board to 5 volunteer Board of Director positions (with 3 parents and 2 non-parents).
  • Sandra Sermone (parent) Founder/President
  • Genie Egerton-Warburton (parent) Vice President
  • Lenore Rath (parent) Secretary
  • Tim Mosier (non-parent) Treasurer
  • Debbie Abraham (non-parent) Director

The Board of Directors of the ADNP-KRF is engaged in supporting the ADNP community in multiple ways. We ask that you will also support our mission and our projects by any or all the following ways---
  • Sign up for our ADNP-KRF newsletter
  • Join our social media sites
  • Volunteer at a ADNP-KRF event
  • Hold a fundraiser
  • Make a donation

Please visit www.adnpfoundation.org for more information.

All of these accomplishments and future projects have been made possible by an all-volunteer team and our generous and caring supporters. Thank you!

Sandra Sermone
President
ADNP Kids Research Foundation
​
Picture

HOME. ABOUT. RESEARCH. SUPPORT-US. PRIVACY-POLICY. ADNP SYNDROME. ADNP GENE. SYNDROME PHENOTYPE.


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. The 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, management and health. Information on ADNP changes is a very fast-moving field and while the information in this guide 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.

    Contact Us if you have Questions

Submit
  • Home
  • WHAT IS ADNP/HVDAS?
    • ADNP Syndrome Full Description
    • What is ADNP Syndrome/HVDAS
    • ADNP GENE
    • Phenotype/Symptoms List
  • ABOUT US
    • Board of Directors
    • Medical and Scientific Advisory Board
    • 501(c)(3) Determination
  • RESEARCH
    • publications
    • DONATE
    • Seaver Autism Center
    • TIGER
  • NEWS
    • Coronis NS FDA ODD
    • NEWS - Biomarker Discovered
    • NEWS - Autism linked biomarker
    • NEWS - p.Tyr719* Case Study
    • Year-End-2017
    • NEWS - Gozes 2017 Award
  • ADNP STORE
  • DONATE/SUPPORT