Rose F. Kennedy Intellectual and Developmental Disabilities Research Center

Highlights

Celebrating International Rare Disease Day
Location: Price Center/Forchheimer
Date: March 2, 2015
 

Rare Disease Day 

Rare Disease Life Story Panel 

Rare Disease Advocacy Panel 

Rare Disease Reception 



Einstein's 4th Annual Rare Disease Day celebration took place on Monday, March 2, 2015, in the Price Center's LeFrak Auditorium.  It was followed by an exhibition and live performance in Forchheimer, on Main Street. This year, the event focused on Lysosomal Storage Disorders (LSDs), marking the 50th Anniversary of the discovery of this group of diseases, and as such, featured two panels, the first of which was made up of three patients who very generously shared their clinical stories, and of a second, advocacy panel, made up of parents. Dr. Steven Walkley gave a brief history of LSDs and Dr. Robert Marion moderated the two panels.  The diseases represented by the patient guests were Gaucher, MPSVI, Fabry, Cystinosis, MPS IIIC and NPC. Following the program in Le Frak, there was a lively and well attended wine & cheese reception on Main Street, where selections from Levi Gershkowitz' "Living in the Light" project was displayed along with Genzyme Corporation's "Expressions of Hope" art exhibition. There was also a live singing performance by Alena Galan, a patient of Dr. Robert Marion.

 
 


Steven Walkley, DVM, PhD 
Albert Einstein College of Medicine
Lysosomal Disease at Half Century: A New Era Emerges
January 23, 2015  
John D. Wiley Conference Center-University of Wisconsin

Dr. Steven Walkley, Einstein Professor of Neuroscience, Pathology and Neurology and Director of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center, was chosen as the University of Wisconsin’s 2015 Harry Waisman Memorial Lecturer. Dr. Walkley’s talk, at the John D. Wiley Conference Center on January 23, 2015, entitled “Lysosomal Disease at Half Century: A New Era Emerges,” provided a historical overview of the challenges faced by researchers in the early years after discovery, of this group of devastating diseases.

 
 

3rd Annual Isabelle Rapin Conference on Communication Disorders: Rett Syndrome  (Wednesday, December 10, 2014) 

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Monica Coenraads 

Aleksandra Djukic 

John Foxe 

Michael Green 

On a rainy Wednesday in early December, over 100 doctors and scientists crowded into the Price Center’s LeFrak Auditorium to hear keynote speakers Dr. Huda Zoghbi of the Baylor College of Medicine, Dr. Michael Green of the University of Massachusetts Medical School, and Monica Coenraads, executive director of the Rett Syndrome Research Trust (RSRT), along with faculty from the Albert Einstein College of Medicine/Montefiore Medical Center, present on many topics ranging from advances in translational research to novel therapeutic approaches related to some of the most common comorbidities specific to Rett Syndrome patients.

 
 

On Friday, February 28, 2014 at the Albert Einstein College of Medicine, the IDDRC-along with CERC, CHAM, and the Block Institute for Clinical and Translational Research-sponsored it's Annual Rare Disease Day Event. This year's event showcased an impressive array of rare-disease research topics currently being studied at Einstein and Montefiore.  The event also featured live performances by Alena Galan, a young woman with Maroteau-Lamy syndrome, who has received treatment at Einstein since she was a toddler.

 
 

Noboru Hiroi, Ph.D. was selected in November 2013 to be a member of the American College of Neuropsychopharmacology and elected member of the Psychiatric Research Society.

 
 

On Monday, October 21, 2013 CERC along with the IDDRC hosted the Second Annual Isabelle Rapin Conference on Communication Disorders, at the Price Center/Block Pavilion. With this year's focus being Dyslexia, the workshop and roundtable was extremely well attended by a large and enthusiastic group of researchers, doctors and practitioners.

 
 

A packed auditorium marked the inaugural Rose F. Kennedy Intellectual and Developmental Disabilities Research Center (IDDRC) symposium held on Monday, April 30, 2013 at the Price Center/Block Pavilion. Greenwichtime.com features Dr. Steven Walkley, director of the Rose F. Kennedy IDDRC, who has been instrumental in developing a new treatment for Niemann-Pick Type C (NPC), a genetic and fatal brain disease. (April 21, 2013)

 
 

Inaugural Rose F. Kennedy Intellectual and Developmental Disabilities Research Center (IDDRC) Symposium (April 30, 2013) 

 
 

Greenwichtime.com features Dr. Steven Walkley, director of the Rose F. Kennedy IDDRC, who has been instrumental in developing a new treatment for Niemann-Pick Type C (NPC), a genetic and fatal brain disease. (April 21, 2013) 

 
 

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) 

 
 

Lauren Gourley and researchers
From left to right, Lauren Gourley, Erin Henninger, Carina Wind, Susan Chinitz
A 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) 

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