A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z | |
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1 | Last Name | First Name | Telephone # | Title | Organization | Address | Major Interest Area or Expertise | |||||||||||||||||||
2 | Birth Defects & Developmental Disabilities | Human Development and Disability | Blood Disorders | |||||||||||||||||||||||
3 | Birth Defects | Craniofacial Malforma- tion | Fetal Death | Fetal Alcohol Syndrome | Folic Acid | Infant Health | Autism | Disability & Health (inclludes intellectual disability) | Tourette's Syndrome | Early Hearing Detection | Muscular Dystrophy | Paralysis Resource Center | AD/HD | Fragile X | Spina Bifida | Congenital Heart Failure | Hemophilia | Thallesemia | Public Health Approaches to blood disorders | |||||||
4 | Abbott (Co-chair) | Rebecca | RAbbott@marchofdimes.org | 202-29202752 | Office of Gov't Affairs | March of Dimes Foundation | ||||||||||||||||||||
5 | Acosta (Co-chair) | Annie | acosta@thearc.org | 202-783-2229 | Director of Fiscal and Family Support Policy | The Arc | 1825 K Street, NW, Suite 1200, Washington, DC 20006 | X | ||||||||||||||||||
6 | Basken | Amy | abasken@conqueringchd.org | 608-370-3739 | Director of Programs | Pediatric Congenital Heart Association | 14 Ellis Potter Court, Suite 100
Madison, WI 53711 | X | X | |||||||||||||||||
7 | Brent | Robert | rbrent@nemours.org | 302-651-6880 | Distinguished Professor of Pediat, Pathol, & Radiol | Jefferson Medical College, DuPont Hospital for Children | Box 269, Wilmington, DE 19899 | X | X | X | ||||||||||||||||
8 | Fenninger | Randy | rfenninger@stoptheclot.org | 914-220-5040 | Chief Executive Officer | National Blood Clot Alliance | 100 White Plains Road, Suite 100, Tarrytown, NY 10591 | X | ||||||||||||||||||
9 | Carlin | Roberta | rcarlin@aahd.us | 301-545-6140, x206 | Executive Director | American Association on Health and Disability | 110 N. Washington Street, Suite 328J, Rockville, MD 20850 | X | ||||||||||||||||||
10 | Christiansen | Dane | christiansen@hmcw.org | 202-544-7499 | National Marfan Foundation, Health and Medicine Counsel of Washington | 507 Capitol Court, NE, Suite 200, Washington, DC 20002 | X | |||||||||||||||||||
11 | Day | Zara | ZDay@dc-crd.com | Cavarocchi Ruscio Dennis Associates LLC, Cooley's Anemia Foundation | ||||||||||||||||||||||
12 | Dennis | Lyle | ldennis@dc-crd.com | 202-484-1100 | Cavarocchi Ruscio Dennis Associates LLC, Cooley's Anemia Foundation | 600 Maryland Avenue, SW, 835W, Washington, DC 20024 | X | X | ||||||||||||||||||
13 | Northrup | Alyson | anorthrup@amchp.org | Association of Maternal & Child Health Programs | ||||||||||||||||||||||
14 | Haddad | Amy | ahaddad@amchp.org | Association of Maternal & Child Health Programs | X | X | X | X | ||||||||||||||||||
15 | Fraser | Michael | mfraser@amchp.org | 202-775-0436 | CEO | Association of Maternal and Child Health Programs | 2030 M Street, NW, Suite 350, Washington, DC 20036 | X | X | X | X | |||||||||||||||
16 | Gary | Johanna | jgray@dc-crd.com | 202-484-1100 x 17 | Cavarocchi Ruscio Dennis Associates LLC, National Hemophilia Foundation | 600 Maryland Avenue, SW, 835W, Washington, DC 20024 | X | X | ||||||||||||||||||
17 | George | Bolanle | bmgee3@gmail.com | 404-819-4557 | President/CEO | Birth Defects Research & Education Foundation | 5181 Pat Wiley Drive, Powder Springs, Georgia 30127 | x | x | x | x | x | x | x | x | x | x | |||||||||
18 | Hughes | Ruth | ruth_hughes@chadd.org | 301-306-7070, x133; | Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD ) | 8181 Professional Place, Suite 150, Landover, MD 20785 | X | |||||||||||||||||||
19 | Imaparato | Andy | aimparato@aucd.org | 301-588-8252, x207; | Executive Director | Association of University Centers on Disabilities (AUCD) | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910 | X | X | X | X | |||||||||||||||
20 | Johnson | Patrick | pjohnson@aap.org | 202-347-8600 | American Academy of Pedriatrics | 601 13th Street, NW, #400, Washington, DC 20005 | X | X | X | X | X | |||||||||||||||
21 | Kaplan | Stephanie | skaplan@hematology.org | 202-776-0544 | American Society of Hematology | 2021 L Street, NW, Suite 900, Washington, DC 20036 | X | X | X | |||||||||||||||||
22 | Kornblau | Barbara | barbara.kornblau@disabilityequity.org | 703-418-1460 | Executive Director | Coalition for Disability Health Equity | X | |||||||||||||||||||
23 | Manetto | Nicholas | nicholas.manetto@faegrebd.com | Faegrebd Consulting | ||||||||||||||||||||||
24 | Manganiello | Michael | michael_manganiello@hcmstrategists.com | 202-547-2222 | Partner | HCM Strategists | 1156 15th Street, NW, Suite 610, Washington, DC 20005 | x | ||||||||||||||||||
25 | Rodgers | Rylin | rrodgers@aucd.org | Director of Public Policy | Association of University Centers on Disabilities (AUCD) | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910 | X | |||||||||||||||||||
26 | Felner | Diana | diana.felner@tourette.org | 718.224.2999, x 202 | Vice President, Public Policy | Tourette Association of America | 1250 Eye Street N.W. Suite 902 Washington, DC 20005 | X | ||||||||||||||||||
27 | Riker | Ellen | eriker@dc-crd.com | 202-484-1100, x13; | Senior Vice President | Cavarocchi Ruscio Dennis Associates LLC, National Hemophilia Foundation | 600 Maryland Avenue, SW, 835W, Washington, DC 20024 | X | X | |||||||||||||||||
28 | Ross | Clarke | clarkeross10@comcast.net | 410-451-4295 | Public Policy Director | American Association on Health and Disability | 1718 Reynolds Street, Crofton, MD 21114 | X | X | |||||||||||||||||
29 | Scott | Jeremy | jeremy.scott@dbr.com | 202-230-5197 | Government Relations Director | Spina Bifida Association, Drinker Biddle & Reath | 1500 K Street, NW, Suite 1100, Washington, DC 20005 | X | X | X | ||||||||||||||||
30 | Smith | Rebecca | smithr@musictherapy.org | 301-589-3300, x108; | Government Relations Associate | American Music Therapy Association | 8455 Colesville Rd. #1000, Silver Spring, MD 20910 | |||||||||||||||||||
31 | Struwe | Sarah | sstruwe@sbaa.org | 202-944-3285, x14 | interim President and CEO | Spina Bifida Association | 4590 MacArthur Blvd., Washington, DC 20007 | X | X | X | ||||||||||||||||
32 | Goldstein | Miriam | m.goldstein@hemophiliafed.org | Hemophilia Federation of America | 820 First St, NE, Ste 720, Washington DC, 20002 | X | X | |||||||||||||||||||
33 | McCoy | Carolyn | cmccoy@astho.org | 571.522.2307 | Senior Director, Federal Government Relations | Association of State and Territorial Health Officials | 2231 Crystal Drive, Suite 450, Arlington, VA 22202 | |||||||||||||||||||
34 | Schubert | Katie | kschubert@smfm.org | Chief Advocacy Officer | Society for Maternal-Fetal Medicine | 409 12th Street SW Suite 601 Washington DC 20024 | ||||||||||||||||||||
35 | Uzl | Nicholas | nicholas.uzl@grifols.com | Manager, Public Affairs | Grifols | 1717 Pennsylvania Ave. NW Suite 250 Washington, DC 20006 | ||||||||||||||||||||
36 | Whiting | Dan | dan@fragilex.org | Director of Communications and Government Relations | National Fragile X Foundation | 2100 M St NW, Suite 170 Box 302, Washington, DC 20037-1233 | ||||||||||||||||||||
37 | Spielman | Stuart | sspielman@autismspeaks.org | Autism Speaks | ||||||||||||||||||||||
38 | Korb | Karin | karink@lakeshore.org | Policy & Public Affairs Coordinator | Lakeshore Foundation | 4000 Ridgeway Drive Birmingham, Alabama 35209 | ||||||||||||||||||||
39 | Meltzer | Donna | DMeltzer@nacdd.org | National Association of Councils on Developmental Disabilities | ||||||||||||||||||||||
40 | Ashinghurst | Erin | erin.ashinghurst@maryland.gov | 410-767-7292 | Administrator, Disability Health Inclusion Program | Maryland Department of Health | 201 W. Preston Street, Room 306-J-8 Baltimore, MD 21201 | |||||||||||||||||||
41 | Gratale | Daniella | Daniella.Gratale@nemours.org | Director | Office of Child Health Policy and Advocacy | Nemours Children’s Health System | ||||||||||||||||||||
42 | Pineo | Jenn | jsp@nhfr.org | New Hampshire Family Voices | ||||||||||||||||||||||
43 | Pratt | Nicole | npratt@spanadvocacy.org | Statewide Parent Advocacy Network | ||||||||||||||||||||||
44 | Mucha | Stephanie (Steph) | smucha@childneurologyfoundation.org | 612.928.6325 | Director, Collaborative Programs & Initiatives | Child Neurology Foundation | ||||||||||||||||||||
45 | Miller | Amy | amiller@childneurologyfoundation.org | 214.789.7316 | Executive Director | Child Neurology Foundation | ||||||||||||||||||||
46 | Musheno | Kim | kmusheno@autism-society.org | Vice President of Public Policy | Autism Society | |||||||||||||||||||||
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