Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters

book-1by Brian G. Skotko and Susan P. Levine

Fasten Your Seatbelt is the first book written exclusively for teens with a brother or sister with Down syndrome. In an easy-to-read, question-and-answer format, nearly 100 questions are tackled on a broad range of their most common issues and concerns. This book gives teens the green light to explore their own feelings and questions about their sibling with Down syndrome and how their relationship may change in the future.

Press release available here. Excerpt available here. Book is available from Woodbine, and Barnes and Noble.  Also available in Japanese from

Media coverage on NPR and If We Knew Then podcast.

Sue Levine and Brian Skotko answer the toughest questions from their book on a YouTube Channel dedicated exclusively to brothers and sisters who have siblings with Down syndrome.  They have also developed an online toolkit for conducting in-person workshops for brothers-and-sisters

Common Threads: Celebrating Life with Down Syndrome

book-2by Brian G. Skotko and Cynthia S. Kidder, with photography by Kendra Dew

Common Threads is an essay and photographic celebration of inspirational accomplishments of people with Down syndrome. This 181-page book, filled with stories and research about the potential and dreams of people with Down syndrome, is perfect for new parents of a baby with Down syndrome or any person who sees great potential in someone with extra chromosomes. Common Threads received the 2002 National Media Award for print publication by the National Down Syndrome Congress.

The book can be purchased through Band of Angels, or Barnes and Noble.


Rafii MS, Sol O, Mobley WC, Delpretti S, Skotko BG, Burke AD, Sabbagh MN, Yuan SH, Rissman RA, Pulsifer M, Evans C, Evans AC, Beth G, Fournier N, Gray JA, Dos Santos AM, Hliva V, Vukicevic M, Kosco-Vilbois M, Streffer J, Pfeifer A, Feldman HH. (2022).  Safety, Tolerability, and Immunogenicity of the ACI-24 Vaccine in Adults With Down Syndrome: A Phase 1b Randomized Clinical Trial. JAMA Neurol. 79(6):565-574. Article.

Yu PK, Stenerson M, Ishman SL, Shott SR, Raol N, Soose RJ, Tobey A, Baldassari C, Dedhia RC, Pulsifer MB, Grieco JA, Abbeduto LJ, Kinane TB, Keamy DG Jr, Skotko BG, Hartnick CJ. (2022). Evaluation of Upper Airway Stimulation for Adolescents With Down Syndrome and Obstructive Sleep Apnea. JAMA Otolaryngol Head Neck Surg. 148(6):522-528. ArticlePress release. NBC Today HealthSTATHealthline.  MedscapeHealthDay.

Goeldner C, Kishnani PS, Skotko BG, Casero JL, Hipp JF, Derks M, Hernandez MC, Khwaja O, Lennon-Chrimes S, Noeldeke J, Pellicer S, Squassante L, Visootsak J, Wandel C, Fontoura P, d’Ardhuy XL; Clematis Study Group (2022). A randomized, double-blind, placebo-controlled phase II trial to explore the effects of a GABAA-α5 NAM (basmisanil) on intellectual disability associated with Down syndrome. J Neurodev Disord. 14(1):10.  Article.

Oreskovic NM, Agiovlasitis S, Patsiogiannis V, Santoro SL, Nichols D, Skotko BG (2022). Brief report: Caregiver perceived physical activity preferences of adults with Down syndrome. J Appl Res Intellect Disabil.  Epub ahead of print, PMID: 35106891. Article.

Skotko BG. (2021). Can a Christ child have Down syndrome? Am J Med Genet C Semin Med Genet, 187(2), 213–215. Article.

Blake JM, Estrada Gomez D, Skotko BG, Torres A, Santoro SL. (2021). Pneumonia and respiratory infection in Down syndrome: A 10-year cohort analysis of inpatient and outpatient encounters across the lifespan. Am J Med Genet A, 185(10):2878-2887. Article.

Hendrix JA, Airey DC, Britton A, Burke AD, Capone GT, Chavez R, Chen J, Chicoine B, Costa ACS, Dage JL, Doran E, Esbensen A, Evans CL, Faber KM, Foroud TM, Hart S, Haugen K, Head E, Hendrix S, Hillerstrom H, Kishnani PS, Krell K, Ledesma DL, Lai F, Lott I, Ochoa-Lubinoff C, Mason J, Nicodemus-Johnson J, Proctor NK, Pulsifer MB, Revta C, Rosas HD, Rosser TC, Santoro S, Schafer K, Scheidemantel T, Schmitt F, Skotko BG, Stasko MR, Talboy A, Torres A, Wilmes K, Woodward J, Zimmer JA, Feldman HH, Mobley W. (2021). Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer’s Disease in Down Syndrome: Early Data from the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) Study. J Clin Med. 10(9):1907.  Article.

Stenerson ME, Yu PK, Kinane TB, Skotko BG, Hartnick CJ. (2021). Long-term stability of hypoglossal nerve stimulation for the treatment of obstructive sleep apnea in children with Down syndrome. Int J Pediatr Otorhinolaryngol., 149:110868.  Article.

Santoro JD, Lee S, Wang AC, Ho E, Nagesh D, Khoshnood M, Tanna R, Durazo-Arvizu RA, Manning MA, Skotko BG, Steinberg GK, Rafii MS (2021). Increased Autoimmunity in Individuals With Down Syndrome and Moyamoya Disease. Front Neurol, 12:724969.  Article.

Santoro SL, Brenner-Miller D, Cottrell C, Bress J, Torres A, Skotko BG. (2021). Using a Communication Passport within a Multidisciplinary Genetics Clinic. Pediatr Qual Saf., 6(5):e472.  Article.

Grieco JA, Hartnick CJ, Skotko BG, Yu PK, Pulsifer MB. (2021). Preliminary Neurocognitive Results Post Hypoglossal Nerve Stimulation in Patients with Down Syndrome. Laryngoscope. 131(12):2830-2833.  Article.

Santoro SL, Campbell A, Cottrell C, Donelan K, Majewski B, Oreskovic NM, Patsiogiannis V, Torres A, Skotko BG. Piloting the use of global health measures in a Down syndrome clinic. (2021). Journal of Applied Research in Intellectual Disabilities. 34(4):1108-1117. Article.

Chung J, Sarathy A, Hsieh YG, Estey G, Torres A, Patsiogiannis V, Donelan K, Skotko BG (2021). Assessment of stakeholder engagement in a Down syndrome research study. J Patient Cent Res Rev. 8:64-7. Article.

Yu PK, Jayawardena ADL, Stenerson M, Pulsifer MB, Grieco JA, Abbeduto L, Dedhia RC, Soose RJ, Tobey A, Raol N, Ishman SL, Shott SR, Cohen MS, Skotko BG, Kinane TB, Keamy DG Jr, Hartnick CJ (2020). Redefining Success by Focusing on Failures After Pediatric Hypoglossal Stimulation in Down Syndrome. Laryngoscope. 31(7):1663-1669.  Article.

Yun HJ, Perez JDR, Sosa P, Valdés JA, Madan N, Kitano R, Akiyama S, Skotko BG, Feldman HA, Bianchi DW, Grant PE, Tarui T, Im K (2021). Regional Alterations in Cortical Sulcal Depth in Living Fetuses with Down Syndrome. Cerebral Cortex, 31: 757-767.  Article.

Santoro SL, Donelan K, Haugen K, Oreskovic NM, Torres A, Skotko BG (2021). Transition to virtual clinic: Experience in a multidisciplinary clinic for Down syndrome. Am J Med Genet C Semin Med Genet. 187(1):70-82. Article.

de Graaf G, Buckley F, Skotko BG. Estimation of the number of people with Down syndrome in Europe. European Journal of Human Genetics. 29(3):402-410.  ArticleSupplementary Materials. Fact sheetPress release.

Chung J, Donelan K, Macklin EA, Schwartz A, Elsharkawi I, Torres A, Hsieh YG, Parker H, Lorenz S, Patsiogiannis V, Santoro SL, Wylie M, Clarke L, Estey G, Baker S, Bauer PE, Bull M, Chicoine B, Cullen S, Frey-Vogel A, Gallagher M, Hasan R, Lamb A, Majewski L, Mast J, Riddell T, Sepucha K, Skavlem M, Skotko BG. (2020). A randomized controlled trial of an online health tool about Down syndrome. Genetics in Medicine. 23(1):163-173. ArticleSupplementary Materials.  Research SummaryInfographicPress Release 1 (en Español).  Press Release 2Good Morning AmericaWCVB (ABC News)GenePodIf We Knew Then podcast.  Dr. Vellody’s podcast.

Kats DJ, Patsiogiannis V, Skotko BG (2020). Epileptic Spasms in Patients With Down Syndrome: Experiences From Caregivers. J Child Neurol. 5(12):813-819.  Article.

Kats DJ, Roche KJ, Skotko BG. (2020). Epileptic spasms in individuals with Down syndrome: A review of the current literature.  Eplepsia Open. 5(3):344-353.  Article.

Oreskovic NM, Cottrell C., Torres,A., Patsiogiannis V, Santoro S, Nichols D, Moore C, Skotko BG. (2020). Physical activity patterns in adults with Down Syndrome. Journal of applied research in intellectual disabilities. 33(6):1457-1464.  ArticlePress release.

Rosso M, Fremion E, Santoro SL, Oreskovic NM, Chitnis T, Skotko BG, Santoro JD (2020). Down Syndrome Disintegrative Disorder: A Clinical Regression Syndrome of Increasing Importance. Pediatrics, 145(6), e20192939.  Article.

Santoro JD, Lee S, Mlynash M, Mayne EW, Rafii MS, Skotko BG (2020). Diminished Blood Pressure Profiles in Children With Down Syndrome. Hypertension (3):819-825. Article.

Mengel D, Liu W, Glynn RJ, Selkoe DJ, Strydom A, Lai F, Rosas HD, Torres A, Patsiogiannis V, Skotko B, Walsh DM (2020). Dynamics of plasma biomarkers in Down syndrome: the relative levels of Aβ42 decrease with age, whereas NT1 tau and NfL increase. Alzheimers Res Ther. 12(1):27.  Article.

Antonarakis S, Skotko BG, Rafii MS, Strydom A, Pape SE, Bianchi DW, Sherman SL, Reeves RH (2020).  Down syndrome.  Nat Rev. Dis. Primers 6: 9.  Article.

Santoro SL, Cannon S, Capone G, Franklin C, Hart SJ, Hobensack V, Kishnani PS, Macklin EA, Manickam K, McCormick A, Nash P, Oreskovic NM, Patsiogiannis V, Steingass K, Torres A, Valentini D, Vellody K, Skotko BG (2020). Unexplained regression in Down syndrome: 35 cases from an international Down syndrome database. Genet Med., 22(4):767-776. Article.

Crombag NM, Page-Christiaens GC, Skotko BG, de Graaf G (2020). Receiving the news of Down syndrome in the era of prenatal testing. Am J Med Genet A.182(2):374-385. ArticlePress release.

Joslyn N, Berger H, Skotko BG (2019).  Geospatial analyses of accessibility to Down syndrome specialty care.  The Journal of Pediatrics (19) 31469-6. ArticlePress release.

Ilacqua A, Benedict J, Shoben A, Skotko BG, Matthews T, Benson B, Allain DC (2019). Alzheimer’s disease development in adults with Down syndrome: Caregivers’ perspectives. Am J Med Genet Part A. 182(1):104-114. Article

Hart SJ, Zimmerman K, Linardic CM, Cannon S, Pastore A, Patsiogiannis V, Rossi P, Santoro SL, Skotko BG, Torres A, Valentini D, Vellody K, Worley G, Kishnani PS (2019). Detection of iron deficiency in children with Down syndrome. Genetics in Medicine, 2(2):317-325, Article.

Tarui T, Im K, Madan N, Madankumar R, Skotko BG, Schwartz A, Sharr C, Ralston SJ, Kitano R, Akiyama S, Yun HJ, Grant E, Bianchi DW (2019). Quantitative MRI Analyses of Regional Brain Growth in Living Fetuses with Down Syndrome. Cerebral Cortex, 30(1):382-390.  Article.

Skotko BG, Allyse, MA, Bajaj K, Best RG, Klugman S, Leach M, Meredith S, Michie M, Stoll K, Gregg, AR (2019).  Adherence of cell-free DNA noninvasive prenatal screens to ACMG recommendations.  Genetics in Medicine, 21(10):2285-2292. ArticleSupplementary material. Press releaseUpdated Assessments from Prenatal Research Information Consortium.

Skotko BG, Samuelson D, Kageleiry A, Lefebvre P, Hellstern M, Campbell J (2019).  Comment on “The price of abandoning diagnostic testing for cell-free DNA screening.”  Prenatal Diagnosis. 39(2):130. Comment.

De Graaf G, Levine SP, Goldstein R, Skotko BG (2019). Parents’ perceptions of functional abilities in people with Down syndrome.  American Journal of Medical Genetics Part A. 179(2): 161-176. ArticlePress release.

De Graaf G, Buckley F, Skotko BG (2018).  Brith and population prevalence for Down syndrome in European countries.  Poster at World Down Syndrome Congress convention, Glasgow, Scotland, July 25-27, 2018.

Santoro SL, Bartman T, Cua CL, Lemle S, Skotko BG (2018). Use of Electronic Health Record Integration for Down Syndrome Guidelines. Pediatrics 142(3). Article.

Lazar J, Woglom C, Chung J, Schwartz A, Hsieh Y, Moore R, Crowley D, Skotko B (2018). Co-Design process of a smart phone app to help people with Down syndrome manage their nutritional habits.  Journal of Usability Studies 13(2): 73-93.  Article.

Hutchinson LE, Donelan K, Macklin EA, Green RC, Skotko BG (2018).  Providers Experience with Cell-free DNA Noninvasive Screening at One Hospital.  ReportTable 1Table 2Table 3.

Samuelson D, Kageleiry A, Sheng Duh M, Lefebvre P, Hellstern M, Campbell J, Skotko BG (2018).  Income Growth Trajectory for Parents of Children with Down Syndrome in the United States.  Report.

Diercks GR, Wentland C, Keamy D, Kinane TB, Skotko BG, de Guzman V, Grealish E, John Dobrowski J, Soose R, Hartnick CJ (2017). Hypoglossal Nerve Stimulation in Adolescents With Down Syndrome and Obstructive Sleep Apnea. JAMA Otolaryngology-Head & Neck Surgery, 144(1):37-42 Article.

Hart S, Visootsak J, Tamburri P, Phuong P, Baumer N, Hernandez M-C, Skotko BG, Ochoa-Lubinoff C, D’Ardhuy X, Kishnani PS, Spiridigliozzi GA (2017). Pharmacological interventions to improve cognition and adaptive functioning in Down syndrome: Strides to date. American Journal of Medical Genetics Part A, 173(11):3029-3041, Article.

De Graaf, G., Buckley, F., Dever, J., Skotko, B.G. (2017).  Estimation of live birth and population prevalence of Down syndrome in nine U.S. states.  American Journal of Medical Genetics, Part A, 173(10):2710-2719Article.  Supplementary Material.  Data for Figure 4.  Data for Figure 5.  Press release. Fact Sheet.

Jayaratne, Y.S.N., Elsharkawi, I., Macklin, E., Voelz, L., Weintraub, G., Rosen, D., Skotko, B.G. (2017).  The facial morphology in Down syndrome: A 3D comparison of patients with and without obstructive sleep apnea.  American Journal of Medical Genetics, Part A, 73(11):3013-3021. Article

Rafii, M.S., Skotko, B.G., McDonough, M.E., Pulsifer, M., Evans, C., Doran, E..,  Muranevici, G., Kesslak, P., Abushakrah, S., Lott, I., for the ELND005-DS Study Group.  (2017).  A Randomized, Double-Blind, Placebo-Controlled, Phase II Study of Oral ELND005 (scyllo-Inositol) in Young Adults with Down Syndrome without Dementia. Journal of Alzheimer’s Disease, 58:401–411. Article.  Press release.  Online information.

Allyse, M., Aypar, U., Bonhomme, N., Darilek, S., Doughtery, M., Farrell, R., Grody, W., Highsmith, W.E., Michie, M., Nunes, M., Otto, L., Pabst, R., Palomaki, G., Runke, C., Sharp, R.R., Skotko, B., Stoll, K. Wick, M. (2017). Offering Prenatal Screening in the Age of Genomic Medicine: A Practice Guide. Journal of Women’s Health, 26(7):755-761. Article.

Lavigne J, Sharr C, Elsharkawi I, Ozonoff A, Baumer N, Brasington C, Cannon S, Crissman B, Davidson E, Florez JC, Kishnani P, Lombardo A, Lyerly J, McDonough ME, Schwartz A, Berrier K, Sparks S, Stock-Guild K, Toler T, Vellody K, Voelz L, Skotko B. (2017). Thyroid dysfunction in patients with Down syndrome: Results from a multi-institutional registry study. American Journal of Medical Genetics Part A, 173A:1539-1545.  Article.

Elsharkawi I, Gozal D, Macklin EA, Voelz L, Weintraub G, Skotko BG. (2017). Urinary biomarkers and obstructive sleep apnea in patients with Down syndrome.  Sleep Medicine, 34:84-89.  Article. Press release.

Skotko BG, Macklin EA, Muselli M, Voelz L, McDonough ME, Davidson E, Allareddy V, Jayaratne YSN, Bruun R, Ching N, Weintraub G, Gozal D, Rosen D. (2017). A predictive model for obstructive sleep apnea and Down syndrome. American Journal of Medical Genetics Part A, 73(4):889-896. Article. Supplementary Materials. Press release.

Kageleiry A, Samuelson D, Duh MS, Lefebvre P, Campbell J, Skotko BG. (2017). Out-of-pocket medical costs and third-party healthcare costs for children with Down syndrome. American Journal of Medical Genetics Part A, 173(3):627-637.  Article.  Press Release.

Allareddy V, Ching N, Macklin EA, Voelz L, Weintraub G, Davidson E, Albers Prock L, Rosen D, Bruun, R, Skotko BG. (2016).  Craniofacial features as assessed by lateral cephalometric measurements in children with Down syndrome.  Progress in Orthodontics, 17(1):35.  Article.

De Graaf G, Buckley F, Skotko B. (2016).  Estimation of the number of people with Down syndrome in the United States.  Genetics in Medicine, 19(4):437-447.  Article. Supplementary Material.  Press Release. Fact Sheet.

Sharr C, Lavigne J, Elsharkawi IMA, Ozonoff A, Baumer N, Brasington C, Cannon S, Crissman B, Davidson E, Florez JC, Kishnani P, Lombardo A, Lyerly J, McDonough ME, Schwartz A, Berrier KL, Sparks S, Stock-Guild K, Toler TL, Vellody K, Voelz L, Skotko BG.  (2016). Detecting celiac disease in patients with Down syndrome. American Journal of Medical Genetics, Part A 170A: 3098-3105.  Article.

Skotko, B.G., Tenenbaum, A. (2016).  Down syndrome.  In Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (Eds.)  Health Care for People with Intellectual and Developmental Disabilities across the Lifespan.  New York: Springer.  Textbook.

Roberts, M., Skotko, B.  (2016). Down syndrome. In Domino FJ (Ed.),, Philadelphia: Wolters Kluwer.

Anthony R. Gregg, Brian G. Skotko, Judith L. Benkendorf, Kristin G. Monaghan, Komal Bajaj, Robert G. Best, Susan Klugman, and Michael S. Watson; on behalf of the ACMG Noninvasive Prenatal Screening Work Group (2016).  Noninvasive prenatal screening for fetal aneuploidy, 2016 update: a position statement of the American College of Medical Genetics and Genomics.  Genetics in Medicine 18(10):1056-1065.  Article.

Jacobs, J., Schwartz, A., McDougle, C., Skotko, B.G. (2016). Rapid Clinical Deterioration in an Individual with Down Syndrome. American Journal of Medical Genetics Part A 170(7): 1899–1902.  Article.

Diercks, G.R., Keamy D., Kinane, T.B., Skotko, B., Schwartz, A., Grealish, E., Dobrowski, J., Soose, R., Hartnick, C. (2016). Hypoglossal Nerve Stimulator Implantation in an Adolescent with Down Sydnrome and Sleep Apnea. Pediatrics 137(5):e20153663.  Article.  Press release.

de Graaf, G., Buckley, F., Skotko, B.G. (2016).  Live births, natural losses, and elective terminations with Down syndrome in Massachusetts.  Genetics in Medicine 18: 459–466.  Article.

Skotko, B.G., Levine, S.P., Macklin, E.A., Goldstein, R.D. (2016). Family perspectives about Down syndrome. American Journal of Medical Genetics Part A 170(4): 930–941.  ArticleSupplementary Materials. Press release.

de Graaf, G., Buckley, F., Skotko, B.G. (2015).  Estimates of the live births, natural losses and elective terminations with down syndrome in the United States. American Journal of Medical Genetics, Part A 167A:756–767.  Article.  Supplementary Materials. Fact Sheet.

Lavigne, J., Sharr, C., Ozonoff, A., Prock, L.A., Baumer, N., Brasington, C., Cannon, S., Crissman, B., Davidson, E., Florez, J.C., Kishnani, P., Lombardo, A., Lyerly, J., McCannon, J.B., McDonough, M.E., Schwartz, A., Berrier, K.L., Sparks, S., Stock-Guild, K., Toler, T.L., Vellody, K., Voelz, L., Skotko, B.G. (2015). National Down syndrome patient database: Insights from the development of a multi-center registry study. American Journal of Medical Genetics Part A 167A:2520–2526. Article.

Grieco, J., Pulsifer, M., Seligsohn, K., Skotko, B., Schwartz, A. (2015).  Down Syndrome: Cognitive and Behavioral Functioning Across the Lifespan.  American Journal of Medical Genetics, Part C 169C:135-149.  Article.

Gregg, A.R., Gross, S.J., Best, R.G., Monaghan, K.G., Bajaj, K., Skotko, B.G., Thompson, B.H., Watson, M.S., are the Noninvasive Prenatal Screening Working Group of the American College of Medical Genetics (2013).  ACMG Statement on Noninvasive Prenatal Screening for Fetal Aneuploidy.  Genetics in Medicine 15(5): 395-398.  Article.

Skotko, B.G., Davidson, E.J., Weintraub, G.S. (2013).  Contributions of a specialty clinic for children and adolescents with Down syndrome.  American Journal of Medical Genetics, Part A 161(3):430-437. Article (English).  Article (Español).

Leach, M., Skotko, B.G. (2012). Resources available for informed prenatal decisions. (Letter to the Editor). Genetics in Medicine: 14:348-349. Letter to the Editor.

Skotko, B.G., Leach, M. (2011).  Physicians need to offer up-to-date information about Down syndrome to expectant couples to inform decision-making [E-letter]. Pediatrics. October 17, 2011. Letter to the Editor.

Skotko, B.G., Levine, S.P., Goldstein, R. (2011).  Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers.  American Journal of Medical Genetics Part A 155:2335-2347.  Article. Survey (in Supplementary Materials). Corrigendum. Press release.

Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a Brother or Sister with Down Syndrome:  Perspectives from Siblings.  American Journal of Medical Genetics Part A: 155:2348-2359.  Article. Surveys (in Supplementary Marterials).  Press release.

Skotko, B.G., Levine, S.P., Goldstein, R. (2011).  Self-perceptions from People with Down Syndrome.  American Journal of Medical Genetics, Part A: 155:2360-2369.  Article. Survey (in Supplementary Materials). Press release.

Rosen, D., Lombardo A., Skotko, B., Davidson, E.J. (2011).  Parental perceptions of sleep disturbances and sleep-disordered breathing in children with Down syndrome.  Clinical Pediatrics, 50:121-125.  Article.

Skotko, B., Kishnani, P., & Capone, G. for the Down Syndrome Diagnosis Study Group (2009).  Prenatal diagnosis of Down syndrome:  How best to deliver the news.  American Journal of Medical Genetics, Part A,149A: 2361-2367. Article.  Press releaseSummary in Spanish.

Skotko, B., Capone, G., & Kishnani, P. for the Down Syndrome Diagnosis Study Group (2009).  Postnatal diagnosis of Down syndrome: Synthesis of the evidence on how best to deliver the news.  Pediatrics,124: e751-e758.  Article.  Press releaseSummary in Spanish.

Skotko, B. (2009).  With new prenatal testing, will babies with Down syndrome slowly disappear? Archives of Disease in Childhood, 94: 823-826.  Article.  Press release with video.

Skotko, B. (2009).  “Driving Forward.”  In Thicker than Water: Essays by Adult Siblings of People with Disabilities. Ed. Don Meyer.  Bethesda, MD: Woodbine House.

Skotko, B. & Levine S. P. (2009). Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.  Bethesda, MD: Woodbine House.

Skotko, B. (2007).  Letter to the editor: First- and second-trimester evaluation of risk for Down syndrome.  Obstetrics and Gynecology, 110: 1426. Article.

Skotko, B. (2006).  Letter to the editor: A surprising postnatal diagnosis.  Obstetrics and Gynecology, 108: 1297. Article.

Skotko, B., & Levine, P. (2006).  What the other children are thinking: Brothers and sisters of persons with Down syndrome.  American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 142C:180-6.ArticlePress release.

Skotko, B.  (2006).  Words matter: The importance of nondirective language in first-trimester assessments for Down syndrome.  American Journal of Obstetrics and Gynecology. 195:625-26. Article.

Skotko, B. (2006).  Letter to the editor: Comparing Three Screening Strategies for Combining First- and Second-Trimester Down Syndrome Markers.  Obstetrics & Gynecology. 107:1170. Article.

Skotko, B., Canal, R. (2006). Continuing a Pregnancy After Receiving a Prenatal Diagnosis of Down Syndrome in Spain. Progresos en Diagnostico y Tratamiento Prenatal. 17: 189-92. ArticleEnglish versionSurvey.

Skotko, B. (2005). Mothers of children with Down syndrome reflect on their postnatal support.Pediatrics. 115: 64-77. ArticleSummary Press Release Survey.

Skotko, B. (2005). Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. American Journal of Obstetrics & Gynecology,192: 670-77. ArticleSummary ,Press Release , Survey .

Skotko, B., & Canal, R. (2005). Postnatal support for mothers of children with Down syndrome.Mental Retardation, 43: 196-212. ArticleSurvey.

Skotko, B. (2005). Communicating the postnatal diagnosis of Down syndrome: An international call for change. Italian Journal of Pediatrics, 31: 237-243. ArticlePress Release .

Skotko, B., & Canal, R. (2004). Apoyo postnatal para madres de niños con síndrome de Down.Revista Síndrome de Down, 21: 54-71. Article.

Skotko, B. & Kidder C. (2001). Common Threads: Celebrating Life with Down Syndrome.Rochester Hills: Band of Angels Press.


Skotko, B., Koppenhaver, D., & Erickson, K. (2004). Parent reading behaviors and communication outcomes in girls with Rett syndrome. Exceptional Children, 70(2): 145-66. ArticleParent & Child Codes.

Koppenhaver, D., Erickson, K., Harris, B., McLellan, J., Skotko, B., & Newton, R. (2001). Storybook-based communication intervention for girls with Rett syndrome and their mothers.Disability and Rehabilitation, 23: 149-159. Article.

Koppenhaver, D., Erickson, K., Skotko, B. (2001). Supporting communication of girls with Rett syndrome and their mothers in storybook reading. International Journal of Disability, Development, and Education, 48: 395-410. Article.


Skotko, B., Rubin, D., & Tupler, L. (2008).  H.M.’s personal crossword puzzles: Understanding memory and language.  Memory, 16: 89-96. Article.

Skotko, B., Andrews, A., & Einstein, G. (2005). Language and the Medial Temporal Lobe: Evidence from H.M.’s Spontaneous Discourse. Journal of Memory and Language, 53: 397-415. Article.

Skotko, B., Kensinger, E., Locascio, J., Einstein, G., Rubin, D., Tupler L., Krendl, A., & Corkin, S. (2004). Puzzling thoughts for H.M.: Can new semantic information be anchored to old semantic memories? Neuropsychology, 18: 756-69. Article.


Grant N, Von Handorf R, Karaa A, Skotko BG. (2021). The experiences and support needs of siblings of people with mucopolysaccharidosis. Am J Med Genet A, 185(11):3418-3426.  Article.

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