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.
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.
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.
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.