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
Brownie Shott
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 (2009 is in the greater Chicago area), 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
Lacey Friedman
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. To volunteer or discuss your fundraising ideas, please contact me.
Medical/Research Committee
Meg Hefner
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
Marion Norbury
Adult Services Committee
Pam Ryan Donna Lacey
An Adult Services Committee has been formed within the CHARGE Syndrome Foundation as a result of a Board meeting held in September 2005. Due to the fact our children are growing, changing and getting older the foundation board members felt it important that we too should grow and support our children thorough their ever changing lives. As this is a new and developing committee there is much work to be done. The first step is to first identify the term “adult” by using state statistics and establishing an appropriate transition planning age with that being age14. The Committee is also developing a geographic (regional) database of adults who have CHARGE syndrome. This contact will enable us to begin to develop adult resources for others to use in understanding, supporting and discovering appropriate medical, educational and independent living services and providers. It will also enable the committee to discover appropriate programs and models of outcome-based approaches to transition from school to adulthood. After contacting individuals who have CHARGE syndrome, parents, specialists and/or programs we will participate in a meeting to be held within the Boston MA area, with the date to be announced. During that meeting discussions will include establishing several unique and continuing specific characteristic needs of adults who have CHARGE syndrome with topics ranging from medical, social, educational and independent living services.
The Foundation’s Adult Services Committee’s job is to identify and sustain informal resources to support and sustain the lifetime management and appropriate independence of individuals who have CHARGE Syndrome.
One of our most important goals is to promote greater participation of our young adults who have CHARGE syndrome within the Foundation. The Adult Services Committee is looking forward to having more individuals who have CHARGE syndrome share at the conferences. We are also planning on providing time for them to meet informally at the next conference independent of parents, family members or specialists. This meeting will be facilitated by one or two Foundation “specialists” with the focus of helping to increase self determination and empowerment of our adult children. Along with this another activity the CHARGE Foundation wishes to create for adults who have CHARGE syndrome is a peer mentoring program connecting adults with adolescents, children and/or their families within their geographic region.
And this is just the beginning. As you can see there is much to be done and will take many individuals to fulfill the dreams of this committee. Anyone wishing to join please contact Pam Ryan or Donna Lacey.
Education Committee
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 is 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. Please do not hesitate to contact me with regard to the Education Committee.
Collaboration Committee
Public Awareness Committee
John Wynne
141 Middle Neck Rd · Sands Point, NY 11050 · 800-442-7604 · info@chargesyndrome.org
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