Committees
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| Family Support /Update |
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POC
Jackie Clark email: JackieClark@aol.com |
Maintain Photo Album Family Updates in newsletter Keep up with address changes to keep mailing list current Coordinate the contacts for the following: A. Early Onset B. Classic CS C. Mild CS
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| Care Givers Support Group |
Families make contact to get or give information a. Family Registry (Data base with Historical, Medical, & Statistical info.)
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Michael May (979) 690-4456 family-registry@cockayne-syndrome.org
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Maintain Registries: Family Questionnaires, Professional Questionnaires |
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Mike & Vivienne Auerbach (301) 924-0545 Heatsam@aol.com
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Financial Resources Help families find creative ways to deal with all the financial challenges |
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Mitri & Violet Hadid (856) 596-1691 vmhadid@juno.com
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Equipment, Supplies, and Product Review (Bulletin Board on Web Page)
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Bill Sayer 15 Swallow Lane Brentwood, NY 11717 (631) 273-5413
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Family/Bereavement Counselor |
Sibling Support |
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Kathy Beisel (334) 433-5317 kmata18230@aol.com
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Sibling Newsletter – printed and e-mailed. Chat Room on web. Plan sibling Retreat time (coordinate with Retreat Committee). Sibling questionnaire or add questions to family
questionnaire about siblings.
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Retreat
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Rose & Bob Vanderhoof (631) 744-7008 orangerosie@aol.com
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Plan and coordinate annual retreat |
Newsletter Committee |
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Shirley Rodriguez (972) 613-6273 J93082@aol.com
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Edit, print & mail newsletters Maintain mailing list Mail packet of information to new families |
| PR/Education Committee | |
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Mike & Lisa Britt (727) 861-5056 lisa_britt@email.msn.com
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Media coverage & education |
Web Page Committee |
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Hans-Peter Seibold (703) 761-9402 seiboldhp@navsea.navy.mil
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Web Site updated with: Photos of children, retreats, fund raising events, newsletter articles, etc. Chat Room & Bulletin Board. Questionnaire on web site to download Updates from all committees, esp. Care Givers Support. Group for resources, etc. Maintain an e-mail address list with group e-mail lists for mass e-mailings & possible future e-newsletter
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| Technological Resources | |
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Bob Vanderhoof (631) 744-7008 orangerosie@aol.com
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Hardware, software, and communications solutions Using technology to make things work better |
Research |
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Shirley Rodriguez (972) 613-6273 J93082@aol.com |
Fields all the calls in the group regarding research. Maintain list of all researchers around the world and their research activities/articles. Researchers can call for list of families interested in partici pating in research studies
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Fund Raising
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Jeanine O’Brien (203) 762-1132 |
Gather information and ideas for fund raising events. Put together packets for those interested in fund raising with
ideas, instructions, legal requirements, etc. Encourage future events,
Analyze successful events. Maintain a data base of past contributors. Send thank you notes.
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Share and Care Aftercare
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Pat Cahill (516) 825-2284 Schemo@peoplepc.com |
Aftercare newsletter: Obituaries-past & current, Anniversary of death notice, Provide support for families, who have lost a child and for those who are preparing for the end
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Central Data Base |
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Shirley Rodriguez
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Administration, and Finance , coordinator |