organizations - friends of ncbddd · organizations organization last ... aschman diane president...

27
Updated January 2015 Organizations Organization Last Name First Name Title Phone Number Email Adult Congenital Heart Association Schaefer Terri Communications Manager 215-849-1260 888-921-2242 [email protected] Tringali Glenn National Executive Director 215-849-1260 [email protected] Alpha-1 Foundation Campbell Bob Communications Director 877-228-7321 ext. 230 305-567-9888 [email protected] American Academy of Audiology Tolpegin Tanya Executive Director 703-790-8466 [email protected] Thomas Kate Director of Payment Policy and Legislative Affairs 703-790-8466 [email protected] American Academy of Child and Adolescent Psychiatry Communications 202-966-7300 communications@aacap. org American Academy of Nurse Practitioners Towers Jan Senior Policy Advisor 202-966-6414 703-740-2529 [email protected]

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Page 1: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Updated January 2015

Organizations

Organization Last Name First Name Title Phone Number Email

Adult Congenital Heart

Association

Schaefer Terri Communications Manager 215-849-1260

888-921-2242

[email protected]

Tringali Glenn National Executive Director 215-849-1260 [email protected]

Alpha-1 Foundation Campbell Bob Communications Director 877-228-7321 ext.

230

305-567-9888

[email protected]

American Academy of Audiology Tolpegin Tanya Executive Director 703-790-8466 [email protected]

Thomas Kate Director of Payment Policy

and Legislative Affairs

703-790-8466 [email protected]

American Academy of Child and

Adolescent Psychiatry

Communications 202-966-7300 communications@aacap.

org

American Academy of Nurse

Practitioners

Towers Jan Senior Policy Advisor 202-966-6414

703-740-2529

[email protected]

Page 2: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

American Academy of Pediatrics Johnson Pat Assistant Director, AAP

Department of Federal

Affairs

202-347-8600 [email protected]

Esquivel Michelle Director, Division of

Children with Special Needs

847-434-4989 [email protected]

Daskalov Rachel Manager, Screening and

Public Health Prevention

Programs

847-434-7863 [email protected]

Gerndt Krysta Program Manager [email protected]

Stob Heather Program Coordinator,

Technical Assistance

[email protected]

American Academy of Physical

Medicine and Rehabilitation

Stautzenbach Thomas Executive Director 847-737-6000 [email protected]

g

American Association on Health

and Disability

Carlin Roberta Executive Director 301-545-6140 [email protected]

Cooper Karl Project Manager 215-803-6542 [email protected]

American Cleft Palate-

Craniofacial Association

Toyama Wendy-Jo Executive Director 919-933-9044 wendy.toyama@acpa-

cpf.org

American College of

Obstetricians & Gynecologists

Hawks Debra Senior Director, Practice

Activities & Strategic

Initiatives

202-863-2445 [email protected]

Mahoney Jeanne Director, Provider's

Partnership

202-314-2352 [email protected]

Page 3: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

American College of Preventive

Medicine

Bonta Paul Associate Executive

Director, Policy and

Government

202-466-2044 ext.

110

[email protected]

American Music Therapy

Association

Preddie Rebecca Federal Programs Analyst 301-589-3300 [email protected]

rg

American Psychological

Association

Gordon Moore Nancy Executive Director,

Governance Affairs

202-336-5585 [email protected]

American Society of Hematology Leous Suzy Director of Government

Relations, Practice and

Scientific Affairs

202-776-0544 [email protected]

Kaplan Stephanie Government Relations

Manager

202-776-0544 [email protected]

Riker Ellen Consultant 202-484-1100 [email protected]

American Society of Human

Genetics

Dougherty Michael Director of Education 301-634-7300 [email protected]

Padmanabhan Nalini Communications Manager 301-634-7346 [email protected]

g

American Speech-Language-

Hearing Association

Paul Diane Director, Clinical Issues in

Speech Language Pathology

301-296-5688 [email protected]

American Thrombosis and

Hemostasis Network

Aschman Diane President and CEO 847-607-9479 [email protected]

Amputee Coalition of America Stout Susan President and CEO 612-518-2603 sstout@amputee-

coalition.org

Page 4: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Izgnaszewski Dan Director of Government

Relations and Marketing

703-330-1699 dan@amputee-

coalition.org

Hogarth Abra Director of Communications ahogarth@amputee-

coalition.org

Gondo George Director of Research and

Grants

ggondo@amputee-

coalition.org

Association of Maternal and Child

Health Programs

Ewig Brent Director Public Policy and

Government Affairs

202-266-3041 [email protected]

Haddad Amy Associate Director

Government Affairs

202-266-3045 [email protected]

Arguello, Jr. Julio Digital Communications

Manager

202-266-3055 [email protected]

McCoy Carolyn Senior Policy Manager 202-266-3042 [email protected]

Taft Kate Senior Program Manager 202-266-3056 [email protected]

Association of Public Health

Laboratories

Ojodu Jelili Director, Newborn

Screening and Genetics

Program

240-485-2772

240-485-2745

(general #)

[email protected]

Association of State and

Territorial Health Officials

Redolph Claire Maternal and Child Health

Senior Analyst

571-318-5429 [email protected]

Pliska Ellen Family and Child Health

Director

571-527-3187 [email protected]

Karczmarczyk Diana Senior Analyst, Tobacco and

Chronic Disease Prevention

571-318-5400 [email protected]

g

Page 5: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Mishra Meenoo Senior Analyst, Health

Equity

571-527-3169 [email protected]

Association of Women's Health,

Obstetric, and Neonatal Nurses

(AWHONN)

Duggan Courtney Manager, Marketing and

Social Media

202-261-2400 [email protected]

Association of University Centers

on Disabilities

Imparato Andy Executive Director 301-588-8252 [email protected]

Griffen Adriane Project Director 301-588-8252 [email protected]

Audiology HEARS Wercholuk Cindy Office Manager 678-804-8008

Autism Society Ferguson Tonia Vice President, External

Affairs

301-657-0881 tferguson@autism-

society.org

Autism Research Institute Edelson Stephen Executive Director 619-563-0915 [email protected]

Autism Spectrum Disorder Risk

Alert

Silverman Jeremy Principal Investigator 212-659-8822 jeremy.silverman@mssm

.edu

Autism Speaks, Inc. Spielman Stuart Senior Policy Advisor and

Counsel

202-955-3312

646-385-8529

sspielman@autismspeaks

.org

Goring Lisa Executive Vice President,

Programs and Services

609-228-7346 [email protected]

g

Avery's Angels Gastroschisis

Foundation

Hall Meghan CEO 855-692-8379 meghanhall@averysange

ls.org

Baby Builders Zervas Chris co-founder 918-938-5593

918-543-5323

[email protected]

Page 6: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Bazelon Center for Mental Health

Law

Barkoff Alison Director of Advocacy, Policy 202-467-5730 communications@bazelo

n.org

Faegre BD Consulting Zook David Chair 202-589-2809 [email protected]

m

Gogol David Vice Chair 202-312-7402 [email protected]

om

Birth Defects Research &

Education Foundation, Inc.

George Bolanle President/CEO 404-819-4557 bolanlegeorge03@yahoo

.com

Brain Injury Association of

America

Ayotte Gregg Director of Consumer

Services

703-761-0750 ext.

642

[email protected]

Breast Health Access for Women

With Disabilities

Toveg Florita Manager 510-204-4522 [email protected]

Brenau University/ Essential

Therapy Services

Alvarado M. Irma Associate Professor/

Occupational Therapist/ CO-

owner

678-679-1261 [email protected]

m

Bronx-Lebanon Hospital Center Arnstein Ellis Developmental-Behavioral

Pediatrician

718-579-7337 [email protected]

California AgraAbility Stiles Martha Program Director 530-752-2606 [email protected]

Cavarocchi-Ruscio-Dennis

Associates, LLC

Dennis Lyle Partner 202-484-1100 [email protected]

Center for Comprehensive Care

and Inherited Blood Disorders

Baker Judith Director of Public Health 310-794-6264 [email protected]

a.edu

Page 7: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Centers for Disease Control and

Prevention/National Center on

Birth Defects and Developmental

Disabilities

Boyle Coleen Director 404-498-3907 [email protected]

Peacock Georgina Acting Director, Division of

Human Development and

Disability

404-498-6743

Moore Cynthia Division Director, Division of

Birth Defects and

Developmental Disabilities

[email protected].

gov

Lucido Sal Associate Director for

Policy, Planning, and

Evaluation

404-498-4031 [email protected]

Stevens Melody Deputy Associate Director

for Strategic Partnerships

[email protected]

Phoenix Weir Ursula NCBDDD Communications

Office

[email protected]

Gibbs Shields Julie Office of Policy, Planning

and Evaluation

[email protected]

Mitchell Betsy Associate Director for

Communication Science

[email protected]

Fehrenbach Nicole Deputy Director, Division of

Birth Defects and

Developmental Disabilities

[email protected]

Beckett Julie Consultant [email protected]

et

Page 8: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Morris Gaylon Principal 610-888-7767 gmorris@morsolutionsdc

.com

Center for Disease Control and

Prevention/Center for Emerging

& Zoonotic Infectious Diseases

Bell Beth Director 400-639-6128 [email protected]

Cerebral Palsy International

Research Foundation

Blackman James Medical Director 212-520-1686 [email protected]

CHADD Vosburgh Susan Director of the National

Resource Center on ADHD

301-306-7070 ext.

12

Susan_vosburgh@chadd.

org

Firestone Sarah Operations Manager 240-487-2329 sarah_firestone@chadd.

org

Gower-Getz April Chief Operating Officer april_gower-

[email protected]

Charcot Marie Tooth Association Livney Patrick Chief Executive Officer 800-606-2682 ext.

102

[email protected]

Christopher & Dana Reeve

Foundation

Valente Donna Director, Quality of Life

Grants

973-467-8270 dvalente@christopherree

ve.org

Sheth Niketa Senior Vice President,

Quality of life

800-539-7309 nsheth@christopherreev

e.org

City MatCH at the University of

Nebraska Medical Center

Abresch Chad Executive Director 402-552-9500 [email protected]

Pecha Denise Director of Programs 402-552-9500 [email protected]

Page 9: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Cooley's Anemia Foundation Dennis Lyle Partner, Government Affairs

Advisor

202-484-1100 [email protected]

Schubert Kathryn Government Affairs Advisor 202-484-1100 [email protected]

Butler Craig Communications Director c.butler@cooleysanemia.

org

Diamond Blackfan Anemia

Registry

Vlachos Adrianna Executive Director 718-470-3610 [email protected]

Disability Section of the American

Public Health Association

Cahill Anthony 2013-2014 Chair 505-272-2990 [email protected]

DuPont Hospital for Children Brent Robert Professor of Pediatrics,

Radiology, Pathology; Head,

Clinical and Environmental

Tartology Research Lab

302-651-6880 [email protected]

Easter Seals Andrus Mary Assistant Vice President,

Government Relations

Easter Seals Office of Public

Affairs

202-347-3066 [email protected]

m

Musgrave Jasmine Communications

Coordinator

202-347-3066 [email protected]

om

Kavalar Reenie Vice President, Program

Services

312-551-7115 [email protected]

m

Exceptional Children's Assistance

Center

Roberts Beverly Project Coordinator, NC SIP

Project

800-962-6817 ext.

323

[email protected]

Page 10: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

EP Foundation for Education, Inc Murphy Frank President and CEO 404-966-9500

707-393-3738

frankjmurphy@comcast.

net

EP Global Communications,

Inc/EP Magazine

Valenzano Joseph President and CEO 201-888-8616 [email protected]

Epilepsy Foundation Vitko Lacy Program Manager and Art

Therapist

301-918-3729 [email protected]

Exceptional Parent Magazine Valenzano, Jr. Joseph President, CEO & Publisher 800-372-7368 [email protected]

Family Voices Inc. Wells Nora Executive Director 781-879-6309 [email protected]

Honberg Lynda Director, Strategic

Parnterships

301-502-1795 [email protected]

rg

Guerney Janis Co-Director Public Policy [email protected]

rg

Bolden Pitre Jennifer Consultant [email protected]

First Candle Stringfellow Fred President 443-640-1049 fred@stringfellowgroup.

net

Reno Laura Director of Marketing and

Communications Program

Director

443-640-1049 [email protected]

First Focus Lesley Bruce President 202-657-0670 [email protected]

Fitzgerald Carrie Senior Policy Advisor on

Health

202-657-0670 [email protected]

Page 11: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

First Signs Inc Wiseman Nancy Founder and President 978-346-4380 [email protected]

Georgia Department of Education Murphy Alice Autism and Program

Specialist

404-657-9957 [email protected]

Grifols Inc Uzl Nick Public Affairs Associate 202-293-1506 [email protected]

Hawaii MCH LEND Program Iwaishi Louise Program Director, Principal

Investigator

808-983-8387 [email protected]

Heart, Head, and Hand Inc. Fay Richard President & Infant Mental

Health & Development

Specialist

386-986-8662 [email protected]

Hemophilia Federation of

America

Verb Katie Policy and Advocacy

Manager

202-675-6984

Hemophilia Foundation of

Michigan

Tussing Travis Regional Coordinator 734-554-0015 [email protected]

Hemophilia of Georgia Inc. Droze Karen Regional Coordinator 770-518-8272 [email protected]

HHT Foundation Clancy Marianne Executive Director 800-448-6389 [email protected]

g

Hope and Light Foundation Miller Stephanie Chairman/CEO 678-591-8331 [email protected]

g

Holland and Knight Conlin Andrew Legislative Assistant 202-469-5121 andrew.scholnick@hklaw

.com

Indiana University School of

Medicine

Diefendorf Allan Associate Professor 317-630-8979 [email protected]

Page 12: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Kennedy Krieger Institute Lipkin Paul Associate Professor of

Pediatrics

443-923-3265 [email protected]

rg

Stone Jacqueline Director of Dissemination 443-923-2792 [email protected]

rg

Lakeshore Foundation Malone Laurie Associate Director of

Research and Education

205-313-7476 [email protected]

Downs Dwight Associate Director of

Development

205-313-7425 [email protected]

Rauworth Amy Director of Policy and Public

Affairs

205-313-7487 [email protected]

Learning Disability Association of

America

Mandlawitz Myrna Policy Director 412-341-1515 mmandlawitz@ldaameric

a.org

Louisiana Maternal and Child

Health Coalition

Ward Martin Janie Executive Director 225-379-7922 [email protected]

Lutheran Services in America -

Disability Network

Copeland Lindsey Director of Advocacy and

Public Policy

202-499-5832 lcopeland@lutheranservi

ces.org

March of Dimes Wigode Emil Director of Federal Affairs 202-659-1800 ewigode@marchofdimes.

com

Wilkinson Diane Deputy Director, Federal

Affairs

202-292-1800 dwilkinson@marchofdim

es.org

Robertson Beverly National Director 914-997-4749 brobertson@marchofdim

es.com

Marcus Autism Center Saulnier Celine Clinical Director for

Research, Assistant

Professor

404-785-9400 [email protected]

du

Page 13: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Pakula Amy Developmental Pediatrician 404-419-4000 [email protected]

Massachusetts Department of

Public Health

Higgins Cathleen Surveillance Coordinator,

Bureau of Family Health and

Nutrition

617-624-5510 cathleen.higgins@state.

ma.us

Muscular Dystrophy Association Cwick Valerie Executive VP, Research and

Medical Director

520-529-5496 [email protected]

Mental Health America Plotnick Debbie Senior Director of State

Policy

703-684-7722 dplotnick@mentalhealth

america.net

Metro Nashville Public Health

Dept.

Wyche Etheridge Kimberlee Director, Family, Youth, and

Infant Health

615-340-5614 kimberlee.wyche@nashvi

lle.gov

Mothers & Babies Perinatal

Network of SCNY

Chesna Sharon Executive Director 607-772-0517 schesna@mothersandba

bies.org

Mother's Milk Bank at Austin Campbell Valarie Milk Donor Coordinator 512-579-3978 [email protected]

National Blood Clot Alliance Fenninger Randy CEO 301-825-9214 rfenninger@stoptheclot.

org

National Association of Councils

on Developmental Disabilities

Meltzer Donna Chief Executive Officer 202-506-5713 ext.

103

[email protected]

National Association of County

and City Health Officials

Snebold Laura Senior Program Analyst 202-507-4235 [email protected]

Runnels Laura Senior Program Analyst 202-507-4285 [email protected]

Page 14: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

National Association of County

Behavioral Health and

Developmental Disability

Directors

Manderscheid Ron Executive Director 202-661-8816 rmanderscheid@nacbhd.

org

National Association of Pediatric

Nurse Practitioners

Chernis Anna Education Specialist 917-746-8294 [email protected]

National Birth Defects Prevention

Network

Kirby Russell Former President 813-396-2347 [email protected]

Mason Craig Director, Center for

Research & Evaluation

207-581-2493 [email protected]

Thomas Kayte 919-633-3372 [email protected]

National Center for Learning

Disabilities Inc.

Jones Lindsay Director of Public Policy and

Advocacy

[email protected]

National Conference of State

Legislatures

Saunders Jennifer Policy Associate, Health

Program

303-856-1440 [email protected]

rg

National Council for Behavioral

Health

Rosenberg Linda President/CEO lindar@thenationalcounc

il.org

Venkatesh Mohini Vice President, Practice

Improvement

202-684-7457 ext.

230

mohiniV@thenationalcou

ncil.org

Foderingham Shelina shelinaF@thenationalcou

ncil.org

National Down Syndrome

Congress

Carroll Jennifer Affiliate Relations Director 770-604-9500 [email protected]

Mora Linda Diversity Resource Manager 770-604-9500 [email protected]

Page 15: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

National Fragile X Foundation Cohen Jeffrey Director of Government

Affairs and Advocacy

800-688-8765 [email protected]

Walker Beth Director of Communications 248-882-3703 [email protected]

National Healthy Mothers,

Healthy Babies Coalition

Salley Rachael Program Assistant 703-837-4792 [email protected]

Soaterna-

Castaneda

Luisa Outreach Manager and

Multicultural Specialist,

Text4Baby

703-838-7551 [email protected]

National Hemophilia Foundation Rice Michelle Vice President, Public Policy

and Stakeholder Relations

212-328-3700 [email protected]

Gray Johanna Federal Policy Advisor 202-484-1100 [email protected]

National Indian Justice Center Myers Raquelle Staff Attorney 707-579-5507 [email protected]

National Marfan Foundation Levering Carolyn Emeritus CEO 516-883-8712

ext. 112

[email protected]

McKenzie Diane Program Associate 516-883-8712 ext.

136

[email protected]

National Multiple Sclerosis

Society

Bebo Bruce Executive Vice President,

Research

212-476-0414 [email protected]

National Organization on Fetal

Alcohol Syndrome

Donaldson Tom President 202-785-4585 [email protected]

Page 16: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

New York State Department of

Health

Cross Philip Assistant Director 518-402-7950 [email protected]

National Institutes of Mental

Health

Thurm Audrey Staff Scientist [email protected];

[email protected]

National Newborn Screening and

Global Resource Center

Taylor Lois Director 850-245-4670; [email protected].

us

Ohio Department of Health Starr Anna Genetics Section Advisor 614-995-5333 [email protected]

Kothari Reena Audiologist [email protected].

gov

Ryan Norma OCCSN Coordinator 614-752-9523 [email protected]

ov

PACER Center Goldberg Paula Executive Director 952-838-9000 [email protected]

Parent Project to End Muscular

Dystrophy

Furlong Pat Founding President and CEO 513-424-0696 [email protected]

g

Fischer Ryan Vice President, Advocacy

and Community Outreach

[email protected]

rg

Parent to Parent USA Brill Kathy Executive Director 717-503-8992 [email protected]

Pediatric Congenital Heart

Association

Basken Amy Director of Programs 608-370-3739 abasken@conqueringchd

.org

Physician and Parent Caregivers Bhagat Santi, KM President 301-983-0406 [email protected]

Page 17: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Reaching for the Stars. A

Foundation of Hope for Children

with Cerebral Palsy

Frisina Gray Cynthia Executive Director cgray@reachingforthesta

rs.org

Rhode Island Department of

Health

Viner-Brown Samara Chief 401-222-5122 samara.viner-

[email protected]

Rhode Island Parent Information

Network

Wardyga Dawn Director, Family Voices and

Family to Family Health

Information Center

401-270-0101 ext.

106

[email protected]

Riley Hospital for Children O'Neil Joseph Neurodevelopmental

Pediatrician

317-944-4846 [email protected]

RTI International Whitehead Nedra Senior Genetic

Epidemiologist

770-986-5051 [email protected]

Blackwell Angela Research Public Health

Analyst

770-407-4940 [email protected]

St. Louis University School of

Public Health

Trevathan Edwin Dean and Professor 314-977-3240 [email protected]

Seattle Children's Hospital

Research Institute

Olson Heather Senior Lecturer 206-987-3810 [email protected].

edu

Jensen Mark Professor 206-884-7900 [email protected].

edu

Slippery Rock University of PA Arnhold Robert Professor and Director 724-738-2847 [email protected]

Kemeny M. Elizabeth Instructor 724-738-4306 [email protected]

du

Page 18: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Sonnenschein, Nath, and

Rosenthal

Russell John Principal 202-408-6392 [email protected]

m

Special Olympics International Eades Ryan Senior Manager, Web

Marketing

202-824-0292 reades@specialolympics.

org

Aylward Lynn Senior Manager and

Consultant, Global Health

and Development

Communication

layward@specialolympic

s.org

Mersereau Darcie Vice President, Health

Programs

202-715-3600 dmersereau@specialoly

mpics.org

Spina Bifida Association Struwe Sara President and Chief

Executive Officer

202-944-3285 [email protected]

Sumera Gretchen Communications and

Outreach Manager

800-621-3141 ext.

29

[email protected]

Stop CMV-The CMV Action

Network

Greenlee Janelle President/Founder 209-712-9929 [email protected]

TASH Alvare Bethany Advocacy Communications

Manager

202-540-8014 [email protected]

TERIS/ University of Washington Polifka Janine Faculty, Co-Director CARE

Northwest

206-543-2465 [email protected]

u

The Arc Cameron Williams Ann Chief Research &

Innovations Officer

202-534-3711 [email protected]

Page 19: Organizations - Friends of NCBDDD · Organizations Organization Last ... Aschman Diane President and CEO 847-607-9479 dashman@athn.org Amputee ... 202-347-3066 mandrus@easterseals.co

Acosta Annie Director of Fiscal and Family

Support Policy

202-534-3723 [email protected]

Bal Sarah Communications Manager [email protected]

The Association of Maternal &

Child Health Programs

Freeman Lori CEO 202-266-3040 [email protected]

The University of Iowa Romitti Paul Associate Professor 319-384-1549 [email protected]

Tourette Syndrome Association Hewko Annetta President 718-224-2999 annetta.hewko@tsa-

usa.org

Proctor Eldride Vice President of Public

Policy

718-224-2999 elridge.proctor@tsa-

usa.org

Colletti-Flynn Tracy Manager, Public Relations

and Communications

718-224-2999 [email protected]

Gary Frank Executive Vice President 718-224-2999 ext.

235

[email protected]

Trisomy 18 Foundation Miller Victoria Executive Director 703-878-7013 [email protected]

Tuberous Sclerosis Alliance Luther Rosbeck Kari President and CEO 301-562-9890 [email protected]

Roberds Steven Chief Scientific Officer 800-225-6872 [email protected]

United Cerebral Palsy DeButts Shelly Director of Marketing and

Communications

[email protected]

United Spinal Association Bennewith Alexandra Vice President, Government

Relations

202-556-2076 ext.

7102

abennewith@unitedspin

al.org

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University of Colorado Stredler-Brown Arlene Adjunct Faculty 303-818-1258 arelene.brown@colorado

.edu

University of Kansas, Research

and Training Center on

Independent Living

Rooney Howland Cat Project Coordinator 785-864-4095 [email protected]

Nary Dot Research Assistant 785-864-4095 [email protected]

University of Maine Mason Craig Associate Professor 207-581-9059 [email protected]

University of Montana Rural

Institute: Center for Excellence in

Disability Education, Research,

and Service

Seekins Tom Director, Research and

Training Center on Disability

in Rural Communities

888-268-2743 [email protected]

du

Vogelsberg R. Timm Executive Director 406-243-5467 [email protected]

mt.edu

Ipsen Catherine Director of Rural

Employment Research

406-243-4562 [email protected]

.edu

University of New Mexico Luckasson Ruth Chair, Dept. of Educational

Specialties

505-277-6510 [email protected]

Cahill Anthony Director, Division of

Disability and Health Policy

505-272-2990 [email protected]

University of Oklahoma Reiner William Professor 405-271-6900 william-

[email protected]

Venous Disease Coalition Hitchcock Wendy Executive Director 303-989-0500;

sheryl.benjamin@

vdf.org

[email protected]

g

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Virginia Board for People with

Disabilities

Lawson Katherine Community Outreach and

Program Manager

804-786-9376 katherine.lawson@vbpd.

virginia.gov

Vitamin Angels Gasca Sarah Digital Marketing Manager "800-564-8400 [email protected]

g

Adult Congenital Heart

Association

Schaefer Terri Communications Manager 215-849-1260

888-921-2242

[email protected]

Tringali Glenn National Executive Director 215-849-1260 [email protected]

Alpha-1 Foundation Campbell Bob Communications Director 877-228-7321 ext.

230

305-567-9888

[email protected]

American Academy of Audiology Tolpegin Tanya Executive Director 703-790-8466 [email protected]

Thomas Kate Director of Payment Policy

and Legislative Affairs

703-790-8466 [email protected]

American Academy of Child and

Adolescent Psychiatry

Communications 202-966-7300 communications@aacap.

org

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Individuals

Last Name First Name Email

Adams Elizabeth [email protected]

Altman Barbara [email protected]

Anderka Marlene [email protected]

Anderson Lynda [email protected]

Andresen Elena [email protected]

Atkinson Julie [email protected]

Bacon Ansley [email protected]

Bain Jen [email protected]

Becker Heather [email protected]

Bernier Oetzel Arielle [email protected]

Block Sandra [email protected]

Botticello Amanda [email protected]

Brock Angie [email protected]

Brown Jeanie [email protected]

Brune Lorenzo Susan [email protected]

Callis Jeff [email protected]

Campbell Margaret [email protected]

Campbell Vincent [email protected]

Cavenaugh Dave [email protected]

Chandan Priya [email protected]

Charles Jane [email protected]

Clarke Philippa [email protected]

Cunniff Christopher [email protected]

Cwik Valerie [email protected]

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Danielewicz Deborah [email protected]

Defries Bouldin Erin [email protected]

Devine Mary Ann [email protected]

Dixon Alicia [email protected]

Domoto Katherine [email protected]

Dooha Susan [email protected]

Dorfman Sally [email protected]

Eisenberg Yochai [email protected]

Elias Eileen [email protected]

Elliot Timothy [email protected]

Froehlich-Grobe Katherine [email protected]

Gary Kelli [email protected]

George Bolanle [email protected]

Gordon Wayne [email protected]

Graff Joyce [email protected]

Gray David [email protected]

Gray Johanna [email protected]

Guerney Janis [email protected]

Hall Jean [email protected]

Havercamp Susan [email protected]

Heaphy Dennis [email protected]

Heinemann Allen [email protected]

Heller Tamar [email protected]

Heuman Kristina [email protected]

Ho Pei-Shu [email protected]

Hobbs Charlotte [email protected]

Hollar David [email protected]

Horner-Johnson Willi [email protected]

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Hsieh Jean [email protected]

Hsieh Kelly [email protected]

Humes Steven [email protected]

Hutchings B. Lynn [email protected]

Jeffress Michael [email protected]

Johnson Kurt [email protected]

Joice Eric [email protected]

Kelly Kim [email protected]

Kirchner Corinne [email protected]

Knox Michael [email protected]

Kochtitzky Chris [email protected]

Kornblau Barbara [email protected]

Kraus Lewis [email protected]

Kreindel Samantha [email protected]

Krok Kristin [email protected]

Lee Jae Chul [email protected]

Lenhart Anna Maria [email protected]

Li Carl [email protected]

Li Henan [email protected]

Lin Sue [email protected]

Lullo Carolyn [email protected]

Rizzolo Mary Kay [email protected]

Marge Michael [email protected]

Marshall Jennifer [email protected]

McCabe Heather [email protected]

McCue Jenny [email protected]

McDermott Suzanne [email protected]

Mersereau Darcie [email protected]; [email protected]

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Meyer Tina [email protected]

Midgette Lynn [email protected]

Minihan Paula [email protected]

Monson Todd [email protected]

Moro Teresa [email protected]

Mucha Stephanie [email protected]

Mudrick Nancy [email protected]

Nehus Vanessa [email protected]

Newman Shelia [email protected]

O'Hara David [email protected]

Packer Alan [email protected]

Paeglow Theresa [email protected]

Parish Susan [email protected]

Patrick Donald [email protected]

Peay Holly [email protected]

Perkins Elizabeth [email protected]

Rader Anne [email protected]

Rasch Elizabeth [email protected]

Rauworth Amy [email protected]

Redmon Susan [email protected]

Reeves Stefanie [email protected]

Rein Marcy [email protected]

Rentas Betty [email protected]

Richardson Stevenson [email protected]

Riddle Ilka [email protected]

Simeonsson Rune [email protected]

Sisirak Jasmina [email protected]

Sloan Michelle [email protected]

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Smeltzer Suzanne [email protected]

Smith Scott [email protected]

Smith Veronica [email protected]

Sparling Eileen [email protected]

Standring Alison [email protected]

Staten Melanie [email protected]

Stice Melinda [email protected]

Stuifbergen Alexa [email protected]

Suzuki Rie [email protected]

Talley Ronda [email protected]

Tapay Valerie [email protected]

Tepp Ronnie [email protected]

Tewey Elizabeth [email protected]

Wheaton Demeika [email protected]

Toomey Jack [email protected]

Toveg Florita [email protected]

Traci Meg [email protected]

Truitt Anjali [email protected]

Tucker Sue [email protected]

Tymeson Garth [email protected]

Uhl Monica [email protected]

Ungar Judith [email protected]

Vanderbom Kerri [email protected]

Vasudevan Vijay [email protected]

Verrall Aimee [email protected]

Volpe Charles [email protected]

Wade Kerri [email protected]

Wan Kristen [email protected]

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Ward Julie [email protected]

Watkins Kayla [email protected]

Webber Danielle [email protected]

Williamson Heather [email protected]

Wilson Lindsay [email protected]

Wolf-Branigin Karen [email protected]

Wolf-Fordham Susan [email protected]

Yates Sarah [email protected]

Yun Stephen [email protected]