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Profiles

Friends of the National Center on Birth Defects and Developmental Disabilities

Friends of the National Center on Birth Defects and Developmental Disabilities, previously known as the External Partners Group (EPG), is an American public-private partnership associated with the National Center on Birth Defects and Developmental Disabilities (NCBDDD).[1][2]

Personnel

Name Position Notes
Rebecca Abbott Executive Committee Chair[3] March of Dimes
Alan Brownstein Executive Committee member (former)[4] National Blood Clot Alliance (NBCA)
Joseph Canose Executive Committee Vice Chair (former)[4:1] Christopher & Dana Reeve Foundation
Tanisha Clarke Communications Chair Association of University Centers on Disabilities (AUCD)
Diana Felner Membership Chair Tourette Association of America
Adriane Griffen Immediate Past Chair Association of University Centers on Disabilities (AUCD)
Lee Grossman Executive Committee member (former)[5] Autism Society of America
George Jesien Immediate Past Chair (former)[5:1] Association of University Centers on Disabilities (AUCD)
Russell Kirby Executive Committee Chair (former)[5:2] National Birth Defects Prevention Network (NBDPN)
Gloria Krahn Executive Committee member (former)[5:3] Oregon Health & Science University (OHSU)
Craig Mason Executive Committee member (former)[4:2] National Birth Defects Prevention Network (NBDPN)
Judy Meehan Executive Committee member (former)[5:4] National Healthy Mothers, Healthy Babies Coalition
Carolyn Mullen Executive Committee member (former)[5:5] March of Dimes
Eileen Ouellette Executive Committee member (former)[5:6] American Academy of Pediatrics (AAP)
Jennifer Bolden Pitre Executive Secretary[6] Family Voices
Clarke Ross Executive Committee member (former)[5:7] Children and Adults with Attention-Deficit Hyperactivity Disorder (CHADD)
Sara Struwe Vice Chair Spina Bifida Association
Judit Ungar Executive Committee member (former)[4:3] Tourette Association of America
Dan Whiting Secretary National Fragile X Foundation
Emil Wigode Executive Committee member (former)[4:4] March of Dimes
Patricia Wright Executive Committee member (former)[4:5] Easter Seals
Jane Correia Member-at-Large National Birth Defects Prevention Network (NBDPN)
Amy Haddad Member-at-Large Association of Maternal and Child Health Programs
Peggy Helm-Quest Member-at-Large Wisconsin Department of Health Services
Pat Johnson Member-at-Large American Academy of Pediatrics (AAP)
Rick Rader Member-at-Large Orange Grove Center
Roberta Carlin Champion[7] American Association on Health and Disability (AAHD)
Randy Fenninger Champion National Blood Clot Alliance (NCBA)
Jeannette Mejias Champion SPAN Parent Advocacy Network
Jennifer Pineo Champion -
Sheri Romblad Champion -
Alison Singer Champion Autism Science Foundation
Courtney Stinnett Champion Sickle Treatment and Outcomes Research in the Midwest (STORM)
Kayte Thomas Champion -
Katie Verb Champion Hemophilia Federation of America
Crystal Bells Family Liaison[6:1] Missouri Family to Family
Brigit Frank Family Liaison Family Voices of Wisconsin
Sondra Gilbert Family Liaison Kentucky Family to Family Health Information Centers (KYF2F)
Artila Mims Family Liaison Arc of Illinois
Nicole Pratt Family Liaison SPAN Parent Advocacy Network
Deepa Srinivasavaradan Family Liaison SPAN Parent Advocacy Network

Members

Members of Friends of NCBDDD include:[1:1]

Organizations

  • Alpha-1 Foundation
  • American Academy of Audiology
  • American Academy of Child and Adolescent Psychiatry
  • American Academy of Nurse Practitioners
  • American Academy of Pediatrics (AAP)
  • American Academy of Physical Medicine and Rehabilitation
  • American Association on Health and Disability
  • American Cleft Palate-Craniofacial Association
  • American College of Obstetricians and Gynecologists
  • American College of Preventive Medicine
  • American Music Therapy Association
  • American Psychological Association
  • American School Health Association
  • American Society of Hematology
  • American Society of Human Genetics
  • American Speech-Language-Hearing Association
  • American Thrombosis and Hemostasis Network
  • Amputee Coalition of America
  • The Arc
  • Association of Maternal and Child Health Programs (AMCHP)
  • Association of Public Health Laboratories
  • Association of State and Territorial Health Officials
  • Association of University Centers on Disabilities (AUCD)
  • Audiology HEARS
  • Autism Society
  • Autism Research Institute
  • Autism Spectrum Disorder Risk Alert (ASDRA)
  • Autism Speaks
  • Baby Builders
  • Bazelon Center for Mental Health Law
  • B&D Consulting
  • Brain Injury Association of America
  • Breast Health Access for Women with Disabilities (BHAWD)
  • Brenau University
  • Bronx-Lebanon Hospital Center
  • California AgrAbility
  • Cavarocchi-Ruscio-Dennis Associates
  • Charcot Marie Tooth Association
  • Children and Adults with Attention-Deficit Hyperactivity Disorder (CHADD)
  • Christopher & Dana Reeve Foundation
  • CityMatCH
  • Cooley's Anemia Foundation
  • Daniella Maria Arturi Foundation
  • Diamond Blackfan Anemia Registry
  • Easter Seals
  • EP Foundation for Education (EPFE)
  • EP Global Communications
  • Epilepsy Foundation
  • Essential Therapy Services
  • Exceptional Children's Assistance Center (ECAC)
  • Exceptional Parent Magazine
  • Family Voices
  • First Candle
  • First Signs
  • Florida Newborn Screening
  • Hawaii MCH LEND Program
  • Hemophilia Federation of America
  • HHT Foundation International
  • Hope and Light Foundation
  • Holland & Knight
  • Indiana University School of Medicine
  • Jefferson Medical College
  • Kennedy Krieger Institute
  • Lakeshore Foundation
  • Learning Disabilities Association of America
  • Lutheran Services in America-Disability Network
  • March of Dimes
  • Marcus Autism Center
  • Massachusetts Department of Public Health
  • Mental Health America
  • Metro Nashville Public Health Department
  • Mothers & Babies Perinatal Network
  • Mothers' Milk Bank at Austin
  • Muscular Dystrophy Association (MDA)
  • National Blood Clot Alliance
  • National Association of Councils on Developmental Disabilities
  • National Association of County and City Health Officials (NACCHO)
  • National Association of County Behavioral Health and Developmental Disability Directors
  • National Association of Pediatric Nurse Practitioners (NAPNAP)
  • National Birth Defects Prevention Network
  • National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)
  • National Center for Learning Disabilities
  • National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  • National Conference of State Legislatures
  • National Down Syndrome Congress
  • National Healthy Mothers, Healthy Babies Coalition
  • National Hemophilia Foundation
  • National Indian Justice Center
  • National Marfan Foundation
  • National Multiple Sclerosis Society
  • National Organization on Fetal Alcohol Syndrome
  • New York State Department of Health
  • National Institute of Mental Health (NIMH)
  • Nemours Children's Hospital, Delaware
  • Ohio Department of Health
  • PACER Center
  • Parent Project to End Muscular Dystrophy
  • Research and Training Center on Disability in Rural Communities
  • Research and Training Center on Independent Living
  • Rhode Island Department of Health
  • Rhode Island Parent Information Network
  • Riley Hospital for Children
  • RTI International
  • Seattle Children's Research Institute
  • Slippery Rock University
  • Sonnenschein Nath & Rosenthal
  • Special Olympics International
  • Spina Bifida Association
  • Stop CMV - The CMV Action Network
  • TASH
  • Teratogen Information System (TERIS)
  • Tourette Syndrome Association
  • Trisomy 18 Foundation
  • Tuberous Sclerosis Alliance
  • United Cerebral Palsy
  • University of Colorado
  • University of Iowa
  • University of Maine
  • University of New Mexico (UNM)
  • University of Oklahoma Health Sciences Center
  • Ural State Medical University
  • Venous Disease Coalition
  • Virginia Board for People with Disabilities

Individuals

  • Brian Altman
  • Marlene Anderka
  • Adeline Barwick
  • Priya Chandan
  • Jane Charles
  • Tracy Colletti-Flynn
  • Julie Cross Riedel
  • Pat Furlong
  • Raymond Glazier
  • Malorie Hensley
  • Hilary Hansen
  • Cindy Ingham
  • Reena Kothari
  • Lynn Midgette
  • Kathy Northrop
  • Theresa Paeglow
  • Clarke Ross
  • Jessica Seay
  • Angela Stewart
  • Rob Wild
  • Barbara Kornblau
  • Alison Standring
  • Garth Tymeson
  • Jack Toomey

  1. Friends of the National Center on Birth Defects and Developmental Disabilities. (2011). Friends of the National Center on Birth Defects and Developmental Disabilities. https://web.archive.org/web/20240704013120/https://friendsofncbddd.wordpress.com/wp-content/uploads/2011/01/friends-of-ncbddd-fact-sheet.pdf ↩︎ ↩︎

  2. National Center on Birth Defects and Developmental Disabilities. (2008, January 7). NCBDDD External Partners. Centers for Disease Control and Prevention. https://web.archive.org/web/20080307063620/http://www.cdc.gov/ncbddd/partners/ ↩︎

  3. Executive Committee 2020. Friends of NCBDDD. Retrieved July 4, 2024, from http://archive.today/2024.07.04-183038/https://friendsofncbddd.wordpress.com/friends-of-ncbddd-executive-committee/ ↩︎

  4. About Us. Friends of NCBDDD. Retrieved February 20, 2011, from https://web.archive.org/web/20110220210733/http://friendsofncbddd.org/about-us/ ↩︎ ↩︎ ↩︎ ↩︎ ↩︎ ↩︎

  5. About Us. External Partners Group. Retrieved June 22, 2009, from https://web.archive.org/web/20090622071952/http://www.externalpartners.org/index.php?option=com_content&task=view&id=15&Itemid=35 ↩︎ ↩︎ ↩︎ ↩︎ ↩︎ ↩︎ ↩︎ ↩︎

  6. The NCBDDD Family Liaisons. Friends of NCBDDD. Retrieved November 28, 2024, from https://web.archive.org/web/20241128235949/https://friendsofncbddd.wordpress.com/family-representative-liaisons-connections-across-thematic-areas/ ↩︎ ↩︎

  7. Friends as Champions. Friends of NCBDDD. Retrieved November 28, 2024, from https://web.archive.org/web/20241128235906/https://friendsofncbddd.wordpress.com/champions/ ↩︎