Mother and father with a baby with Down syndrome

Latest Fund for Excellence Awards: March 2019

The Human Development Institute (HDI) established the Fund for Excellence for the development of innovative programs, services or products to address the needs of individuals with developmental disabilities and their families, for which funding is not currently available. In the January, 2019 funding cycle, HDI awarded two Fund for Excellence projects:

Dr. Elaine Eisenbaum’s Music for All Inclusive Summer Music Camp, with Lindsey Mullis, Megan Jasperson, Dr. Chithra Adams, Dr. Olivia Swedberg Yinger, Austin Robinson, and Dr. Martina Vasil

Stephanie Meredith’s Prenatal and Postnatal Medical Outreach Modules to Improve the Genetic Diagnosis Experience for Families, with Dr. Harold Kleinert,  Julie Chien, and Angela Trepanier

“The Fund for Excellence gives HDI the ability to launch innovative and needed projects that are really collaborative in nature, as evidenced by our most recently funded round of applications. They foster partnerships across HDI, the University and beyond. These projects will yield important opportunities and resources to build inclusive communities,” said HDI’s director, Kathy Sheppard-Jones.

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Two men with Down syndrome working on their phones.

Spring Seminar: Employment for Youth with Disabilities: Seeing a Brighter Future

“As an employer, I’ve been fortunate to have employees with intellectual disabilities who meaningfully contribute to our programs, and as a mother, I have been so proud of my own son with Down syndrome as he has worked in the community at a grocery store and is also working toward a career as a photographer, and I don’t think these are isolated cases of what success can look like. People with intellectual disabilities have much to offer when given the opportunity!” – Stephanie Meredith

Our Spring Seminar on “Employment for Youth with Disabilities: Seeing a Brighter Future” was held on Thursday, March 21, 2019 from 6:30 – 8:30pm ET, and it’s available now online.

The seminar was held at the UK Coldstream Research Campus Human Development Institute Training Room 1525 Bull Lea Road, Lexington KY. A link to the live video stream of the seminar was sent to registrants. Continue reading

Photo of Stephanie Meredith

Remote Staff Spotlight: Stephanie Meredith

By Bill Mazzoleni

Stephanie Meredith is HDI’s Information Services Director. She has worked at HDI for five years. What brought her to HDI is her and Harold Kleinert’s work on resources about Down syndrome for new and expectant parents. They met in 2007 at a conference about setting the research agenda for Down syndrome at the CDC, and he started reviewing material that Meredith created about Down syndrome. He was also working on the Brighter Tomorrow’s website. In 2012, they decided to come together and put their projects as one National Center for Prenatal and Postnatal Resources at HDI. Stephanie also works on the KentuckyWorks Grant employment project. This focuses on youth with significant intellectual disabilities transitioning from high school to work or post-secondary education. Continue reading

Updated “Understanding a Down Syndrome Diagnosis” book Available Now

The nationally recommended book for new and expectant parents learning about Down syndrome, Understanding a Down Syndrome Diagnosis, from the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute, has been recently updated with unprecedented collaboration from leading experts across the nation to improve the diagnosis experience for families.  Continue reading

Boy with Jacobsen syndrome

Research Brief Spring 2017

Having a Son or Daughter with Jacobsen Syndrome/11q Deletion Syndrome: Perspectives of Parents

by Stephanie Meredith, Anthony Lobianco & Harold Kleinert

Jacobsen syndrome (JS) is a rare genetic condition that often causes intellectual disabilities and health issues and has recently been added to various cell-free DNA prenatal screening tests. This condition often includes multiple physical features, a blood disorder, serious congenital heart defects in about 56% of patients, and a range of intellectual disabilities (ID). Individuals may also experience mild to moderate impairment in expressive language, vision problems, digestive issues; and common infections of the upper respiratory system [Grossfeld, 2004]. However, because JS is relatively rare, psychosocial research has never been performed on this population. Correspondingly, a patient education resource about this condition has not yet been published that reflects “the medical and psychosocial implications of the diagnosis” identified as a priority in the ACMG guidelines when providing information to prospective parents learning about screening results.

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