Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters
by 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.
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.
Common Threads: Celebrating Life with Down Syndrome
by 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.
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, Early view online. Supplementary material. Press release. Updated 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. Article. Press 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.
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):2710-2719, Article. 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.), www.5MinuteConsult.com, 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.
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. 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. 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 release. Summary 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 release. Summary in Spanish.
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.Article, Press 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. Article, English version. 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. Article, Summary ,Press Release , Survey .
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. Article, Parent & 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.
MEMORY & LANGUAGE
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.
Mucha BE, Banka S, Ajeawung NF, Molidperee S, Chen GG, Koenig MK, Adejumo RB, Till M, Harbord M, Perrier R, Lemyre E, Boucher RM, Skotko BG, Waxler JL, Thomas MA, Hodge JC, Gecz J, Nicholl J, McGregor L, Linden T, Sisodiya SM, Sanlaville D, Cheung SW, Ernst C, Campeau PM (2018). A new microdeletion syndrome involving TBC1D24, ATP6V0C, and PDPK1 causes epilepsy, microcephaly, and developmental delay. Genetics in Medicine. Article.