CHARGE Syndrome Foundation

Letter from the President

Dear Friends,

It is with great excitement that I write you this letter. As you know the Foundation’s corporate office has always been in Columbia, Missouri, thanks to the dedicated work by Marion Norbury, one of our founders and our Executive Director. Over the past years the Board of Directors has been looking at ways to move our Foundation to the next level. To that end, we have moved our office and have restructured our staff.

I am very pleased to announce that in the summer of 2007 we moved the CHARGE Syndrome Foundation executive office to the campus of the Helen Keller National Center (HKNC), in Sands Point, New York on Long Island. Marion has assumed the title of Director of Family Services and will be once again working from her home. (For more than 10 years, until September of 2004, her home had served as the office for the Foundation.) In her new position, Marion will continue to respond to phone calls, emails, and letters from families and others seeking information about CHARGE syndrome; prepare the newsletter, CHARGE Accounts; assist with conference planning; and pursue some new projects that she has been unable to work on due to the responsibilities that she has had as Executive Director. Kyna Byerly, who joined the office staff in 2004, is no longer with the Foundation. Kyna is now employed as a Consultant for the Heartland Regional Genetics Coordinating Center. This new position gives Kyna the opportunity to return to her profession as a genetic counselor.

We have also hired a new Administrative Director (AD). Lori Bookstaver has started working for us as our AD and will run the day to day aspects of the Foundation at the new office and be a liaison to other organizations.

We are also excited to announce that CHARGE Syndrome: A Management Manual for Parents is now available not only in print version, but also at our website. The Manual has over 250 pages of information which can be downloaded in its entirety or in sections. The online format will make it possible for us to revise and add new information on an ongoing basis.

Sincerely yours,
Neal Stanger
President, CHARGE Syndrome Foundation, Inc.

2009 CHARGE Conference:

CHARGE Syndrome Foundation Video

Letter from the President