Clinical Advisory Board

Praveen Keshava, MD

Ophthalmology

Praveen is an eye physician and surgeon, residing in Vermont.  He first became involved with CDKL5 after the birth of his fourth child Anisha – or Ani, for short.  Anisha is a beautiful, loving child, who is affected by the lack of a CDKL5 gene.  From the moment Ani was born, Praveen promised her that he would do everything possible to help her reach her full potential.  Praveen has a degree in biochemical sciences from Harvard University and doctorate in medicine from NYU.  He hopes to utilize his medical background and his unique experiences as a father to Ani to help the Collaborative’s goal to improve the lives of all the children affected by this disorder.

Michelle Saunders Haney, PT, MSPT

Director, Euro-Peds

Haney is a licensed Physical Therapist specializing in pediatrics and has been the Director of Euro-Pēds National Center for Intensive Pediatric PT since 2003. She holds a Bachelor of Science degree in Child Development and a Master of Science degree in Physical Therapy from Central Michigan University. Prior to becoming the Director of Euro-Peds, Michelle had previous experience as a staff PT and PT Manager. Euro-Pēds is a specialized therapy center treating a nationwide base of patients who have neuromuscular disorders. Euro-Pēds opened in 1999 as the first intensive pediatric PT program outside of Europe. Since 2007, Euro-Peds has treated more children with CDKL5 Deficiency than any other physical therapy program in the nation!  In 2013, Michelle founded the Euro-Peds Foundation which raises funds and awards grants to help children with special needs access life-changing treatment at Euro-Peds. Haney’s sister, who has severe mental & physical disabilities as a result of spinal meningitis, was her initial inspiration to foster a better way of teaching children with gross motor disorders new skills for greater independence.

Jeanette Jones, MOT, OTRL

Occupational Therapist

Jeanette Jones MOT, OTRL, is a graduate from Eastern Michigan University, where she earned a Bachelor of Science degree and a master’s degree in occupational therapy.  Jeanette began her career working in the northern suburbs of Chicago, where she worked in private practice with children with sensory integration challenges, autism and other developmental delays.  She currently works with a child with CDKL5 at Kaufman Children’s Center in West Bloomfield, MI, where she is the Assistant Director of the occupational therapy department.  Jeanette has been an invited speaker at the CDKL5 Family conferences where her knowledge and passion for helping children was evident to all who met her! Jeanette is trained in sensory integration, oral motor and feeding work, self-regulation, social skills and DIR/Floortime.  Jeanette enjoys spending time with her husband and two young sons.

Kelly Garland-Egeler MT-BC

Music Therapist

Kelly Garland-Egeler, MT-BC is a board certified music therapist.  Kelly was board certified in 2010, after graduating from Eastern Michigan University in Ypsilanti, MI.  That same year, Kelly also established her music therapy private practice, Life Dynamic Music Therapy, LLC.  Kelly enjoys serving her clients, and her areas of expertise are in ASD, early childhood development, and adults with dementia and Alzheimer’s.  Kelly has been working with a child with CDKL5 deficiency for 3 years and has gained great insight into music therapy's role in drawing out communication, interaction and purposeful engagement in this syndrome.   Kelly is married to Jake, and they have one son, Maximilian.

CDKL5 Research Collaborative

PO Box 26

Dexter, MI 48130

CRC is a 501(c)(3) 

non-profit

EIN# 82-2453342

 

 

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