January 25, 2011 Presenter: Sheri Stanger Director of Outreach CHARGE – Toll Free Number ( )

Mission To provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

What is CHARGE syndrome? CHARGE syndrome is a complex genetic condition seen in about 1 in 10,000 births CHARGE is an acronym coined in 1981 from some of the main features seen in many children Clinical diagnosis by major and minor characteristics is still the most common and least expensive determination of this syndrome CHD7 Gene (a regulatory gene on Chromosome 8) was discovered in the Netherlands in 2004 Confirmed that CHARGE is a genetic condition CHARGE is one of the leading causes of deaf-blindness in the USA

Major Features in CHARGE syndrome

The CHARGE Syndrome Foundation is a Lifeline for many families We offer SUPPORT, INFORMATION and HOPE

Who Are We?  We are a non-profit, charitable organization  Established in 1993  Volunteer based with 12 board members of which 7 must be individuals with CHARGE or their family members  Special Advisors  Administrative Assistant  Director of Outreach

Target Audience Individuals with CHARGE syndrome Family Members Professionals who work with these individuals and their families

RESOURCES Website: Parent to Parent Contact Lists New Parent Folder Professional Packet Management Manual for Parents in English and Spanish Brochures CHARGE Accounts – our quarterly newsletter Medical Bibliography

International Conferences Largest worldwide gathering of individuals with CHARGE, their families, professionals and experts on CHARGE every other year Professional Day – prior to conference Evening Reception 3 days of plenary and break-out sessions Exhibitor Fair Poster Presentations

A Life Changing Experience 10 th International CHARGE Syndrome Conference July 28-31, 2011 Orlando, FL Social Events – Idol Extravaganza and Carnival/Dance with a Silent Auction Opportunities to talk with professionals throughout the weekend Share experiences with other families Sib Shops, Father’s Session, Grandparent’s Session CHARGE 101 strand for new parents Transition strand Lounge for young adults with CHARGE Day Camp for all children

Committees Research Committee and Medical Advisory Board Fundraising Committee – Charge It for CHARGE campaigns, Fundraising Video Conference Committee Education Committee Communications Committee Adult Services Committee Family Services Committee

. List-serv Facebook page and Twitter Membership – Power in Numbers! Director of Outreach – New position to build capacity, increase collaboration and support, inform and connect families

Contact Information: CHARGE Syndrome Foundation, Inc. 141 Middle Neck Road Sands Point, NY Phone: (516) Toll Free: (800) Fax: (516) Administrative Assistant – Lori Bookstaver Web site: Sheri Stanger – Director of Outreach CHARGE ( )