Developing and Managing a National Volunteer Program

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Developing and Managing a National Volunteer
Program

• Jannine Cody, Ph.D.
• President
• The Chromosome 18 Registry Research Society
• Director
• The Chromosome 18 Clinical Research Center
• UT Health Science Center at San Antonio

April 18 at 12 noon EST (call-in)
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The Chromosome 18 Registry Research Society

• To help individuals
• with chromosome 18 abnormalities
• overcome the obstacles they face
• so they might lead happy, healthy
• and productive lives.

Established in 1990
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Identified Families
Number Identified
Genotype
587
18q-
282
18p-
145
Ring 18
150
Tetrasomy 18p
413
Trisomy 18
23
Mosaic Trisomy 18
12
Trisomy 18p
30
Trisomy 18q
1
Ring Trisomy 18
195
Other
1,838
TOTAL
06/29/2006
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Global Distribution

• North America
• US - 1401
• Canada - 93
• Mexico - 8
• South Central America - 16
• Europe - 185
• Asia -11
• Australasia - 69
• Africa - 7
• Middle East - 7

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Current Board Members
Executive Committee Jannine Cody Ben
Flowe Catherine Burzio Denise Parker John Cody
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Current Board Members
Syndrome Coordinators Katie Schilly Stephanie
Shively Pamela Del Angel Catherine Burzio Judith
Wolpert
Regional Coordinators Kristen Earl Cindy
Josephson Sue Bentivenga Angie Moss Martha
Sakre Lisa Mazur Susan Guthrie Monica
McDivitt Kimberly Rodriguez Susan Guthrie Deb
Ammann Shelley Hunt Marlene Brightwell Eva
DeCarlo Leo Garcia
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Staff Members
Claudia Traa Executive Director Gloria
Ellwanger Administrative Director
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7155 Oakridge Drive
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(No Transcript)
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OperationalPrinciples
Business No money no good deeds
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OperationalPrinciples
Office Volunteers New member packets
Outreach Dues notices Conference
Membership lists Education
Newsletters Fundraising
Website Annual Report
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Board Coordinators

• Syndrome Coordinators
• Moderate listserve
• Send welcome email or letter
• Regional Coordinators
• 1 Educational Event
• 1 Fundraising event
• 1 Social event

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Registry Investment in Research
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Never believe that a few caring people can't
change the world. For, indeed, that's all who
ever have. Margaret Mead