The Foundation relies on volunteers from all over the country to help raise awareness and support, reach out to other families, and help caregivers make informed decisions. Volunteers sit on committees that plan and implement Foundation services and events, as well as participate in the Awareness and/or Regional Coordinator programs.
Awareness Coordinators (ACs) are volunteers who raise awareness about CdLS through community activities/events, outreach to professionals and government leaders and contact with the media. ACs are typically family members or caregivers of an individual with CdLS and are passionate about increasing awareness of the syndrome.
Regional Coordinators (RCs) are volunteers who are parents or caregivers of individuals who have CdLS. They are generally the first line of contact for parents facing problems or looking for support in caring for their loved one with CdLS.
Clinical Advisory Board
Clinical Advisory Board (CAB) volunteers are responsible for attending Foundation sponsored family gatherings and/or participate in biennial conference when able; address questions submitted through the Foundation’s Ask the Expert form via the staff liaison; periodically may be asked to write an article for the Foundation’s newsletter, Reaching Out; and encouraged to present new projects/research and direction based upon needs assessment, focus groups or surveys. Representatives range from the following disciplines: Anesthesiology, cardiology, genetics, dentistry, ENT, gastroenterology, internal medicine, neurology, nutrition, ophthalmology, orthopedics, psychology, psychiatry, radiology, speech and language.
Professional Development Committee
Professional Development Committee (PDC) volunteers will guide the Foundation in identifying, developing, implementing and evaluating the services provided to Foundation members, professionals and the public. Representatives range from the following disciplines: physical therapy, occupational therapy, social worker, registered nurse, registered dietician, education, special education, allied health, public safety, speech and language, behavior specialist, group home managers
Conference Committee oversees, coordinates and evaluates the Foundation’s biennial national conference; assuring that the conference addresses identified needs of the families of children with CdLS. Committee members are asked to serve a term of four years. During the term, the committee will participate in at least two conference calls annually to discuss proposals/ideas ahead of the Board of Directors meetings, held in the spring and fall. Additional calls may be scheduled, as needed.
Research Committee keeps the Board apprised of scientific developments related to CdLS, and its members possess the appropriate research/medical background to make recommendations related to research.
Family Service Council
Family Service Council volunteers guide the Foundation in development, implementation and evaluation of information, resources and support services to families whose children have CdLS throughout the lifespan.
Bilingual Coordinator Volunteers
Bilingual Coordinator Volunteers provide better resources and support for the Spanish-speaking families we hear from. If you are bilingual in Spanish and English, you can be a life-saving resource for these families around the country.
Team CdLS Volunteers
Team CdLS Volunteers or Curb Crew volunteers are used to anchor a spot so that all the runners know they will have the chance to pass a Team CdLS support location. Members are asked to hold a few key items for runners such as power gels and Band-Aids.
New England and Missouri Golf Volunteers
New England and Missouri Golf Volunteers can help in obtaining sponsorships, silent auction and raffle items. They can attend the golf tournament and be support staff to the individuals running the event. Volunteers can also help in outreach activities.
Development Committee oversees efforts to seek external funding as it relates to such external programs as: corporate donations, foundations/grants, clubs and organizations, special events, National Conference and federated campaigns.
Office Volunteers will assist with daily office duties including mailings, putting together material packets, shredding and other administrative duties. We will set a schedule based on your availability to work with our team.