Rare People with Unique Talents
Einstein's Rose F. Kennedy University Center for Excellence in Developmental Disabilities, the IDDRC and CERC hosted their second annual International Rare Disease Day on February 28. An art exhibit, “Rare People with Unique Talents on an Almost Rare Day,” was sponsored in collaboration with AHRC NYC and the Institutes of Applied Human Dynamics.
The artists who displayed their artwork in this exhibit are children and adults who participate in the programs named above. Works included various art media, including paintings, sculptures, paper mache and computer-generated artwork.
The lobby of the Van Etten building was beautifully decorated by these artworks which brought attention to the abilities and the unique and individual talents of children and adults who may have a rare disease or developmental disability. Over 100 viewers, from clinicians, researchers, staff, families and children, came to the opening celebration, and they were astonished to see the creative endeavors of special people who are making an impact on our larger community.
By all accounts this special event achieved its goal of expanding appreciation of the unique talents of individuals with developmental disabilities and encouraged us all to see beyond disability in our relationships with others.
(February 28, 2013)
NIH's National Center for Advancing Translational Sciences (NCATS) annouces the launch of the Niemann-Pick Type C1 (NPC) Phase 1 Clinical Trial on January 23, 2013. Animal studies conducted by several academic researchers, including the NIH Therapeutics for Rare and Neglected Disease (TRND) program collaborator, Steven Walkley, D.V.M., Ph.D. of the Albert Einstein College of Medicine, discovered the efficacy of cyclodextrin for NPC. Read the press release.
Associate director of RFK IDDRC, John Foxe, Ph.D., discusses the latest trends in autism research, theories and treatment including his own findings on why children with autism integrate information from the senses differently. Dr. Foxe is director of research at Albert Einstein College of Medicine's Children's Evaluation and Rehabilitation Center. He is also a professor of pediatrics and of neuroscience at Einstein. This edition of Einstein On is hosted by Gordon Earle, associate dean for communications and public affairs. (Januray 15, 2013)
IDDRC researcher Lisa Shulman, M.D. shares her insights on The Doctor’s Tablet – Reflections from the frontlines of Science and Medicine – Understanding and Treating Autism: We Need a Bigger Table. Dr. Shulman is a neurodevelopmental pediatrician, associate professor of Pediatrics, Einstein Director of Infant and Toddler Services and the RELATE program, Children’s Evaluation and Rehabilitation Center. (Januray 3, 2013)
First Isabelle Rapin Conference on Communication Disorders: Williams Syndrome Workshop and Roundtable (December 6, 2012)
"B.R.A.IN Kids!" Promotes Research and Fun (November 17, 2012)
Spirits Lifted at CERC Halloween Party (October 31, 2012)
From left to right, Lauren Gourley, Erin Henninger, Carina Wind, Susan ChinitzA study led by IDDRC researcher Lauren Gourley, LCSW, examined the relationship between sensory processing difficulties, parental stress, and behavioral problems in a clinical sample of young children with developmental and behavioral difficulties. The findings of the study suggest that treatment outcomes might improve and parental stress could be reduced if mental health clinicians were trained to identify and address sensory problems. This could result in more children being screened and treated for sensory processing difficulties and an eventual reduction in the rates of parental stress. This study was published online in the Journal of Child and Family Studies (August 14, 2012). Lauren Gourley is Director of the Clinical Training Center for Babies, Toddlers and Families, a division of the Early Childhood Center at the Albert Einstein College of Medicine. (Posted November 2012)
Simons Foundation Autism Research Initiative (SFARI) features research by Sophie Molhom, Ph.D., a study on the Development of Multisensory Integration in High-Functioning Autism. The findings of the study suggest that difficulties with audiovisual integration may play a role in the broad autism phenotype, the collection of autism-like traits shared by many family members of people with autism. (June 7, 2012)
Dr. Steven Walkley, director of Rose F. Kennedy IDDRC, and Dr. Marc Patterson, a pediatric neurologist from the Mayo Clinic and a member of the RFK IDDRC’s external advisory committee, were presented with certificates of special recognition by Senator Richard Blumenthal of Connecticut at the reception for the annual gala benefit and concert for Dana’s Angels Research Trust (DART). (May 5, 2012)
A Rare Day at Einstein (February 29, 2012)