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Last NameFirst NameEmailTelephone #TitleOrganizationAddressMajor Interest Area or Expertise
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Birth Defects & Developmental DisabilitiesHuman Development and DisabilityBlood Disorders
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Birth Defects Craniofacial Malforma- tion Fetal Death Fetal Alcohol SyndromeFolic AcidInfant HealthAutismDisability & Health (inclludes intellectual disability)Tourette's SyndromeEarly Hearing DetectionMuscular DystrophyParalysis Resource CenterAD/HDFragile XSpina BifidaCongenital Heart FailureHemophiliaThallesemiaPublic Health Approaches to blood disorders
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Abbott (Co-chair)RebeccaRAbbott@marchofdimes.org202-29202752Office of Gov't AffairsMarch of Dimes Foundation
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Acosta (Co-chair)Annieacosta@thearc.org 202-783-2229
Director of Fiscal and Family Support PolicyThe Arc1825 K Street, NW, Suite 1200, Washington, DC 20006X
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BaskenAmyabasken@conqueringchd.org608-370-3739Director of ProgramsPediatric Congenital Heart Association14 Ellis Potter Court, Suite 100
Madison, WI 53711
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BrentRobertrbrent@nemours.org 302-651-6880 Distinguished Professor of Pediat, Pathol, & RadiolJefferson Medical College, DuPont Hospital for ChildrenBox 269, Wilmington, DE 19899 XXX
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FenningerRandyrfenninger@stoptheclot.org914-220-5040 Chief Executive OfficerNational Blood Clot Alliance100 White Plains Road, Suite 100, Tarrytown, NY 10591X
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CarlinRobertarcarlin@aahd.us 301-545-6140, x206 Executive DirectorAmerican Association on Health and Disability110 N. Washington Street, Suite 328J, Rockville, MD  20850X
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ChristiansenDanechristiansen@hmcw.org 202-544-7499 National Marfan Foundation, Health and Medicine Counsel of Washington507 Capitol Court, NE, Suite 200, Washington, DC 20002X
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DayZaraZDay@dc-crd.comCavarocchi Ruscio Dennis Associates LLC, Cooley's Anemia Foundation
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DennisLyleldennis@dc-crd.com202-484-1100 Cavarocchi Ruscio Dennis Associates LLC, Cooley's Anemia Foundation600 Maryland Avenue, SW, 835W, Washington, DC 20024XX
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NorthrupAlysonanorthrup@amchp.orgAssociation of Maternal & Child Health Programs
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HaddadAmyahaddad@amchp.orgAssociation of Maternal & Child Health ProgramsXXXX
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FraserMichaelmfraser@amchp.org 202-775-0436 CEOAssociation of Maternal and Child Health Programs2030 M Street, NW, Suite 350, Washington, DC 20036XXXX
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GaryJohannajgray@dc-crd.com202-484-1100 x 17Cavarocchi Ruscio Dennis Associates LLC, National Hemophilia Foundation600 Maryland Avenue, SW, 835W, Washington, DC 20024XX
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GeorgeBolanlebmgee3@gmail.com404-819-4557President/CEOBirth Defects Research & Education Foundation5181 Pat Wiley Drive, Powder Springs, Georgia 30127xxxxxxxxxx
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HughesRuthruth_hughes@chadd.org 301-306-7070, x133; Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD )8181 Professional Place, Suite 150, Landover, MD 20785X
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ImaparatoAndyaimparato@aucd.org 301-588-8252, x207; Executive DirectorAssociation of University Centers on Disabilities (AUCD)1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910XXXX
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JohnsonPatrickpjohnson@aap.org202-347-8600American Academy of Pedriatrics601 13th Street, NW, #400, Washington, DC 20005XXXXX
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KaplanStephanieskaplan@hematology.org 202-776-0544 American Society of Hematology2021 L Street, NW, Suite 900, Washington, DC 20036 XXX
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KornblauBarbarabarbara.kornblau@disabilityequity.org 703-418-1460 Executive DirectorCoalition for Disability Health Equity X
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ManettoNicholasnicholas.manetto@faegrebd.comFaegrebd Consulting
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ManganielloMichaelmichael_manganiello@hcmstrategists.com 202-547-2222PartnerHCM Strategists1156 15th Street, NW, Suite 610, Washington, DC 20005x
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RodgersRylinrrodgers@aucd.orgDirector of Public Policy Association of University Centers on Disabilities (AUCD)1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910X
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FelnerDiana diana.felner@tourette.org718.224.2999, x 202 Vice President, Public Policy Tourette Association of America1250 Eye Street N.W.
Suite 902
Washington, DC 20005
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RikerElleneriker@dc-crd.com 202-484-1100, x13; Senior Vice PresidentCavarocchi Ruscio Dennis Associates LLC, National Hemophilia Foundation600 Maryland Avenue, SW, 835W, Washington, DC 20024XX
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RossClarkeclarkeross10@comcast.net 410-451-4295 Public Policy DirectorAmerican Association on Health and Disability1718 Reynolds Street, Crofton, MD 21114XX
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ScottJeremyjeremy.scott@dbr.com 202-230-5197 Government Relations Director Spina Bifida Association, Drinker Biddle & Reath1500 K Street, NW, Suite 1100, Washington, DC 20005XXX
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SmithRebeccasmithr@musictherapy.org 301-589-3300, x108; Government Relations AssociateAmerican Music Therapy Association8455 Colesville Rd. #1000, Silver Spring, MD  20910
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StruweSarahsstruwe@sbaa.org202-944-3285, x14 interim President and CEOSpina Bifida Association4590 MacArthur Blvd., Washington, DC 20007XXX
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GoldsteinMiriamm.goldstein@hemophiliafed.orgHemophilia Federation of America 820 First St, NE, Ste 720, Washington DC, 20002

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McCoyCarolyncmccoy@astho.org571.522.2307Senior Director, Federal Government RelationsAssociation of State and Territorial Health Officials2231 Crystal Drive, Suite 450, Arlington, VA 22202
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SchubertKatiekschubert@smfm.orgChief Advocacy OfficerSociety for Maternal-Fetal Medicine409 12th Street SW Suite 601 Washington DC 20024
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UzlNicholasnicholas.uzl@grifols.comManager, Public Affairs Grifols1717 Pennsylvania Ave. NW Suite 250 Washington, DC 20006
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WhitingDandan@fragilex.orgDirector of Communications and Government RelationsNational Fragile X Foundation2100 M St NW, Suite 170 Box 302, Washington, DC 20037-1233
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SpielmanStuartsspielman@autismspeaks.orgAutism Speaks
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KorbKarinkarink@lakeshore.orgPolicy & Public Affairs Coordinator Lakeshore Foundation4000 Ridgeway Drive
Birmingham, Alabama 35209
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MeltzerDonnaDMeltzer@nacdd.orgNational Association of Councils on Developmental Disabilities
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AshinghurstErinerin.ashinghurst@maryland.gov410-767-7292 Administrator, Disability Health Inclusion ProgramMaryland Department of Health201 W. Preston Street, Room 306-J-8
Baltimore, MD 21201
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GrataleDaniellaDaniella.Gratale@nemours.orgDirectorOffice of Child Health Policy and AdvocacyNemours Children’s Health System
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PineoJennjsp@nhfr.orgNew Hampshire Family Voices
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PrattNicolenpratt@spanadvocacy.orgStatewide Parent Advocacy Network
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MuchaStephanie (Steph)smucha@childneurologyfoundation.org612.928.6325 Director, Collaborative Programs & InitiativesChild Neurology Foundation
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MillerAmyamiller@childneurologyfoundation.org214.789.7316Executive DirectorChild Neurology Foundation
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MushenoKimkmusheno@autism-society.orgVice President of Public PolicyAutism Society
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