CHARGE Syndrome Foundation - Foundation Committees

The Foundation

Committees

The CHARGE Syndrome Foundation has set up several committees. If you would like to join any of the committees, or would like more information please email the committee chair listed below. Watch this page for more details on committee functions coming soon.

Conference Committee

Contact: Janet Murray
The conference committee is dedicated to organizing the biennial International CHARGE Syndrome Conference (held in the odd numbered years). The goals are to perform site selection (2011 is in Orlando, Florida), to garner support and make local arrangements in the way of volunteers and professional staff for childcare and registration, generate monetary and in-kind donations (snacks for volunteers, printing, local transportation, items for Saturday night event, etc.), assist during program sessions, assist families with general or specific needs once at the conferences, solicit donations for children’s program or character visits, solicit sponsors for meals or special events at conference, contact local agencies for interpreters (ASL, Spanish, or others as required).

Fundraising Committee

Contact: David Wolfe

The Fundraising Committee is responsible for planning and leading a variety of activities to generate the financial support which allows the Foundation to continue its important work. In a recent planning process it was estimated that over the next three years, the Foundation will need to raise about $300,000.

This money will come from private donations, foundation and corporate grants, sales of clothing and other logo items, and benefit events including our semi-annual auction. In 2006, a new fundraising program called "Friends in CHARGE" will give all members an opportunity to reach out to their friends and families to ask for their support.

To achieve its increasing goals, the Fundraising Committee needs additional help. We welcome participation from any member or others who support our great cause.

Professional Board and

Medical/Research Committee

Contact: Diane Haynes (Professional Board) and Meg Hefner (Medical/Research)

The Medical/Research Committee has two separate but related purposes. The research subcommittee is made up of a combination of parents and professionals who are interested in research related to CHARGE. All of the business is conducted by email. The committee is responsible for reviewing 1) requests for participation of CHARGE Syndrome Foundation members in research protocols and 2) requests for funding of research by the Foundation. The review of requests often involves providing feedback on the study design to investigators. Many proposals have been altered based on such feedback. The research committee then makes a recommendation to the Board of Directors, who make a final decision on participation and/or funding. Approved proposals then can be presented as having the "seal of approval" from the CHARGE Syndrome Foundation.

This committee has periods when very little is going on and other times that are relatively busy. Eventually, if the Foundation is able to raise enough money earmarked for research, we would like to get to the point where we could actually direct research: solicit research proposals looking at specific subjects.

The related arm of the Medical/Research committee is the Professional Board. This is a loose group of medical and educational professionals who are interested in and/or doing research related to CHARGE syndrome. At an informal meting the day before each conference, this group gathers for an afternoon and each member briefly talks about what he or she is doing in relation the CHARGE syndrome. This is a wonderful way for people to meet each other and talk about the different approaches to all sorts of aspects related to CHARGE, from the gene discovery to hearing tests to behavioral management. Speakers at the conference are invited to attend this meeting. Others who are interested should contact Meg shortly before the biennial conferences.

Anyone interested in joining this committee should contact Meg Hefner by email.

Family Services Committee

Contacts: Pamela Ryan

The Family Services Committees oversees a variety of activities relating to the needs of families who have an individual with CHARGE syndrome. The committee strives to be of service to all families living with CHARGE syndrome including families with a new baby, families with an older child or adult who has just received a diagnosis (and those who have a long-standing diagnosis), or families who have questions or need help in obtaining information or access to other families in their region. The Family Services Committee can also be helpful in connecting family members with other specialists and families in their area.

Adult Services Committee

Contacts: Cynthia Antaya

Mission:

The mission of the CHARGE Adult Services Committee is to provide a range of supports to young people with CHARGE syndrome, 18 years of age and older, who wish to attend the International CHARGE Syndrome Conference.

Workshops, sessions and group activities will be offered at the biennial conferences on a wide variety of topics relevant to the interests and needs of the young adult with CHARGE. These topics might include:

navigating the adult service delivery system—either by the consumer with CHARGE his/herself and/or the parents of the young adult with CHARGE. Activities will be designed to assist the young consumer in exploring this "whole new world."
providing young adults opportunities to socialize and to share their experiences with families with younger children and opportunities to network with one another
conducting action planning session for families who are not anticipating college or extra schooling for their children.

All activities during conference will take into consideration the varying needs of all young adults with CHARGE. The CHARGE Adult Committee will strive to provide programming that is inclusive and responsive to individuals with CHARGE across the age spectrum.

Anyone wishing to join this committee, please contact Pam Ryan

Education Committee

Contact: Lori Swanson & Kathy McNulty

Mission:

The mission of the Education Committee of the CHARGE Syndrome Foundation is, through ongoing consultation and collaboration with families and professionals, to make the educational experience positive for all individuals with CHARGE syndrome and their families.

Once families get familiar in dealing with the doctors, nurses, surgeons, therapists, and the health care system in general wherever they live, one of the next biggest challenges is education. Learning how to navigate through the education system, figure out what is appropriate for their child's education, learning about educational rights, and how to advocate successfully for their child within the system can be a daunting task for many parents.

The Education Committee was formed to collaborate with professionals and families to discern what the main issues are relating to the education of individuals with CHARGE syndrome and how best to address these issues. The committee will be developing and pursuing goals that will work toward making the educational experience a positive one for all individuals with CHARGE syndrome.

Click here for a list of commonly used education-related acronyms.

Collaboration Committee

Contact: Neal Stanger

Public Awareness/Communications Committee

Contact: Lisa Weir

This committee is responsible for maintaining the Foundation web site as well as other online projects, overseeing the publishing of the online CHARGE Accounts newsletter and looking after any other public awareness or communications issues that arise.