The Bulletin Board contains information of interest to families with KS-- research they can participate in, reviews of books and products,and announcements of events and other happenings. If you would like something added to this page, send Margot an email.
Dr. Jeff Milunsky, director of clinical genetics and associate director of molecular genetics, and colleagues from the Boston University School are interested in finding the etiology of Kabuki syndrome. They are looking for additional clients with Kabuki to participate in their study. There is no cost to participate and all information is kept confidential.
Your child should have a confirmed Kabuki diagnosis. Participation would require a blood sample from both child with Kabuki and parents, if possible.
For further information, please contact Dr. Jeff Milunsky at:
Boston University School of Medicine
Researchers at The Children's Hospital of Philadelphia are interested in identifying the genetic etiology of Kabuki syndrome. There is no cost to participate and all information is kept confidential. For further information, please contact:
Alisha Biser, MS.
Researchers at The Children's Hospital of Philadelphia are interested in identifying the genetic etiology of Kabuki syndrome. There is no cost to participate and all information is kept confidential. For further information, please contact:
Melissa Ciano, M.S.
Howie & Ross Therapy Cycles (Scotland) is a small family-run company that specialises
in the adapatation and manufacture of stabilised cycles and dual-bikes for
children and young adults with special needs.
Using standard BMX low gravity frames, the cycles have been innovated for
children who do not want, or need, a tricycle but find that riding a
two-wheeled cycle is beyond their capabilities. The stabilised cycles create vehicles that function like tricycles, but retain the appearance of normal cycles.
"Children with special needs have a strong desire to be independent and
merge with other children, we hope that our concept of stabilised cycling
will go some way to achieve this objective."
For further information please contact:
HOWIE & ROSS THERAPY CYCLES (SCOTLAND)
Baby Joggers - "We have found baby joggers to be our most valuable piece of equipment - we have a single and a double. I find the time that I spend with Evan while running (or racing) to be very special. Baby joggers help our family to be "normal" in many cases when we otherwise couldn't."
Our son has both Kabuki syndrome and alcohol affects, both of which manifest themselves similarly, and this book is written by parents and teachers of affected children. It's an easy read with tons of insight and ideas on dealing with our 'special' kids.
This book provides many practical ways to teach reading to our
children with special needs. In particular, the book focuses on teaching
children sight words first. This strategy produces instant success in addition to giving immediate meaning to the term "reading." After they are "hooked," children can then progress to letter recognition. In this way, the book offers an alternative to the school system's usual process of teaching letter recognition first.
Written specifically for parents, this book explores the theories and facts of sensory integration therapy. Its intention is to help parents understand their child's behavior. It contains some facinating information on how children must learn to "master gravity" and how this later translates into the easier learning of many other tasks.
A guide for the parent, caregiver, and/or medical/education professional
to help understand exactly what sensory dysfunction is and how they can
help the child to function "normally" and to cope with this disorder.
It also offers parents a sense of
relief from feelings of guilt by stressing that their child was born with sensory dysfunction and parents are not responsible for causing it.
I have found it
a valuable tool for our family and in helping deal with Robert's tactile
defensiveness.
This book describes what a child with special needs may
encompass and how
raising such a child may affect family, marriage and friendships. It
discusses common problems and disabilities and whether or not they are
inherited or acquired disabilities. The book examines the care of your child with special needs:
for example, strategies for helping, tests and procedures, adaptive
equipment, medications, surgeries and hospitalization, and aftercare.
Assessments, education and resource development are also discussed.
A step-by-step guide to teaching everyday skills to children with special needs. Provides practical tips and a section on behavior problems. It covers areas such as: toilet training, play, self-help and more. It also contains a chapter on computers with advice on using technology to enhance your child's learning.
A resource catalog on various publications for children with special needs. It contains guidebooks, assessment tools, videos, curriculum, transitioning, inclusion and more.
It takes an indepth look at the signs a child displays when struggling to read. Plus, it gives the parent exposure to the various reading programs that are available, as well as the tests that can be given to determine if help is needed.
This book discusses in depth the connection between speech, language and listening and a child's ability to learn. It lists the warning signs for parents to be aware of, when to request help, how to read an evaluation report and how such problems can effect a child in school and at home. I found it to be a valuable resource tool and quite informative.
Not being a very creative person, I found this a wonderful guide! It provides the parent various ways to provide sensory therapy while playing (much like the OT's do). A must for every parent with a child on a sensory diet!
The perfect sensory guide for traveling, rainy days, doctor's office visits, etc.
Kabuki Syndrome Genetic Research
Submitted by Dr. Jeff Milunsky
700 Albany Street, Suite W408
Boston, MA 02118
Ph# 617-638-7083
Fax# 617-638-7092
Email: jmilunsk@bu.edu
Kabuki Syndrome Genetic Research
Submitted by Alisha Biser, M.S.
Certified Genetic Counselor
The Children's Hospital of Philadelphia
Clinical Genetics Center
34th St. and Civic Center Ave.
Philadelphia, PA 19104
Ph# 215-590-2920
Fax# 215-590-3298
Email: Bisera@email.chop.edu
Certified Genetic Counselor
The Children's Hospital of Philadelphia
Clinical Genetics Center
34th St. and Civic Center Ave.
Philadelphia, PA 19104
Ph# 215-590-2920
Fax# 215-590-3298
Email: Ciano@email.chop.edu
Therapy Cycles
Submitted by Howie & Ross Therapy Cycles (Scotland) on 20 February 1999:
Hunterston Farm
Mauchline
Ayrshire
KA5 5JD
Scotland
Telephone/Fax 01292 591228
Email: NeilMcNaughton@compuserve.com
Other Useful Bike Options
Submitted by Margot Schmiedge on 18 October 1999:
Jog/Walk with ease
Submitted by Greg Gogolin on 27 September 1999:
Book References
ISBN number 0-912006-65-X, 1993
Published by Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817, ph#
1-800-843-7323
Published by Western Psychological Services, Publishers and Distributors,
12031 Wilshire Boulevard, Los Angeles, CA 90025-1251
A Pedigree Book
by The Berkley Publishing Company, New York, NY, 1998.
Paul H. Brookes Publishing Co., Baltimore, MD, 1995.
Brookes Publishing, Baltimore, MD 1997 (www.brookspublishing.com)
Brookes Publishing, PO Box 10624, Baltimore, MD 21285-0624
Phone: 1-800-638-3775
Fax: (410)337-8539
email: www.brookespublishing.com
Ed.D., Broadway Books, a Division of Random House Inc.,
1540 Broadway, New York, NY 10036, 2002
John Wiley & Sons, Inc., New York, NY, 2001
Berkley Publishing Co., a division of Penquin Putnam Inc.
375 Hudson Street, New York, NY 10014, 2003
Skylight Press
260 West 72nd Street, Suite 6-C, New York, NY 10023, 1995
