Care Today Cure Tomorrow…
Special
Needs Trusts: Protect Your Child's Financial Future
Published by NOLO; 3
edition (the experts on pro-bono [legal do it yourself])
272 Pages with
a CD of Legal forms & more
$34.99 Order
for only $23.09 (34% off)
free shipping
available
ARC of
Hunterdon Saturday Program & Summer Day Camp
A Saturday
Drop Off respite program for ages 7-18 with occasional sleepovers
at Point Breeze in
There is no cost for either program but you
need to be
The ARC of Hunterdon can assist you in
becoming
Please click on the title link above for full
details.
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T Winter
Family Rettreat NJ & Surrounding Region
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2009 T T
2008 T T
2007 T
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Downloadable Rett Syndrome Documents – created by and provided at no
charge by Unicorn Meadows.
What is Rett Syndrome (what’s wrong with her?) [Download
pdf file]
What Kids (& Parents) ask about
Rett Syndrome (why
is she so different?) [Download
pdf file] updated June 2011
Silent Angels (Life with A
Special Needs Child) ©2006 Cindy Krivoshik,
CCRN.
[Download pdf file without copyrighted magazine image(s)]
Primary Rett Links
Rett Syndrome Magazine
– Rett
Syndrome Magazine is for & about those with Rett Syndrome & those who
love them, care for them, befriend them, or otherwise serve them. The mission
of this online magazine is to focus on solutions, services, & supports that
enhance the day-to-day lives of those in the Rett Syndrome community. This
includes those with Rett Syndrome, parents, caregivers, siblings, friends,
physicians, researchers, nurses, educators, social workers, therapists, and
others. Our goal is to freely share information, stories, &
inspiration with others.
Rett Syndrome Research Trust – Welcome to the Rett Syndrome Research Trust. A newly
formed 501(c)(3) nonprofit organization intensively focused on the development
of treatments and cures for Rett Syndrome and related MECP2
disorders. The strength of the Trust is based on the guidance of founders and
advisors who are largely responsible for the major advances in Rett research
over the past decade.
International Rett Syndrome Foundation
– Information,
resources & RETTNET. International
Rett Syndrome Foundation
is a 501(c)(3) non-profit organization.
The International Rett Syndrome
Association & the Rett
Syndrome Research Foundation merged in July 2007 to form
the International Rett Syndrome
Foundation.
National
Center for Biotechnology Information
National Institute of Health Rett
Syndrome Booklet-2006
[Download pdf file 12 pages 8˝ x 11]
National
Institute of Health Rett Syndrome Fact Sheet Printer
Friendly Web Page
Request free mailed brochure from
NIH (one to ten copies)
USDA Agricultural Research Service
Helping Girls with
Rett Syndrome Improve Growth
Coping With Rett Syndrome [Download pdf file]
Rett Articles [downloadable pdf files]
National
Influence of Mutation Type and X Chromosome Inactivation on Rett
Syndrome Phenotypes American Neurological Association [Download pdf file]
When
The Brain Fails – Huda Zoghbi unravels the genetics of Rett Syndrome and other
disorders [Download pdf file]
How Research Advances Will Affect People with Developmental Disabilities
in the 21st Century American Association on Mental Retardation
Global Transcription and Translation Repression in
Human-Embryonic-Stem-Cell-Derived Rett Syndrome Neurons [Download pdf file]
Other Articles [downloadable pdf files & on-line articles]
Family Support Center of New Jersey
NJ Division
of Developmental Disabilities News Center
Tax
benefits for parents with handicapped children from Ask.com
The Law & Disabilities
free various articles
Regional US Rett Links
New Jersey Rett Syndrome Association [Members from
Northwest Rett Syndrome Foundation [Members from
Rett Syndrome Association of Illinois [Members from
Southeastern Rett Syndrome Alliance
Rett Links Around the World [these links may not be in English
unless so noted]
Australia [In English]
Austria [In German]
Belgium [In Dutch]
Brazil [In Portuguese]
Ontario Rett
Syndrome Association
[In English]
Catalan [?]
Denmark [In Danish]
France [In French]
Rett Syndrome Europe [In English]
Germany [In German]
Holland [In Dutch]
Israel [In Hebrew]
Italy [In Italian]
Japan
[In Japanese]
Norway [In Norwegian]
Poland
[In Polish]
Spain
[In Spanish]
Spain [In Spanish] different web site
Sweden [In Swedish]
Turkey [In Turkish]
Sweden [for
English access link click here] [Dual Language Web Site in Swedish & English]
United
Kingdom [In English]
Select Rett Links
Living Well
With Rett Syndrome
Rett Syndrome Magazine Rett Syndrome on-line Magazine.
Rett e-mail Lists
IRSF RettNet – IRSF RettNet is a
moderated e-mail forum for all
interested persons, parents, teachers, relatives, therapists, doctors and
friends who have an interest in Rett Syndrome.
Subscribers to IRSF RettNet are primarily parents and guardians, but
also include a number of relatives,
therapists, teachers, physicians, researchers, and others interested in
the cause.
List for Adults who have
a Rett Syndrome Angel in their life [You must create a free Yahoo profile]
Rett Syndrome
Parents [You must create a free Yahoo profile]
Books about Rett Syndrome
Silent
Angels – The Rett Syndrome Story
VHS tape by IRSA [out
of print] now available through amazon.com
{Please confirm current price and availability with the order
link.}To
order
The
Official Parent's Sourcebook on Rett Syndrome: A Revised and Updated Directory
for the Internet Age by Icon Health Publications
Paperback
(November 2002) Icon Group International - 184 pages – ISBN: 0597831203.
{Please confirm current price and availability with the order
link.} To order
Pathways
to Learning in Rett Syndrome by Jackie Lewis
& Debbie Wilson
Paperback (May 1998) David Fulton Pub – 144 pages – ISBN: 185346533X.
{Please confirm current price and availability with the order
link.} To order
Rett
Disorder and the Developing Brain by Alison Kerr
(Editor), Ingegerd Witt Engerstrom (Editor)
Hardcover (April 2001) Oxford Press – 379 pages – ISBN: 0192630830.
{Please confirm current price and availability with the order
link.} To order
The
Official Parent's Sourcebook on Rett Syndrome: A Revised and Updated Directory
for the Internet Age by Icon Health Publications
Paperback
(November 2002) Icon Group International - 184 pages – ISBN: 0597831203.
{Please confirm current price and availability with the order
link.} To order
Select Commercial Sources
(these
links have been provided by Rett Families, Relative & Friends – No
endorsement is made by this web site)
AssistedLivingStore.com
– Wholesale Linen & Textile products.
Gloves In A
Bottle – Protects the skin and retains its natural moisture.
Hinkle,
Fingles & Prior – NJ/PA Attorneys with many years of experience providing
expert counsel and legal services to families of people with disabilities.
Most of their
attorneys have a sibling or family member with disabilities, so that have been
there.
How-to-Register-a-Service-Dog-or-How-to-Scam-the-Disabled – Actually the article
explains how to avoid being scammed out of hundreds of dollars.
Spot,
a service dog, is the “owner” of http://www.ServiceDogTags.com
and is a prolific writer, with his owner’s assistance, on matters
concerning service dogs and the disabled. Spot lets his owner help him put the
web site together and write articles as it's hard as heck to type with paws.
Besides it's good to throw his owner a bone every once in a while so he feels
useful. Formerly DoggyDMV, they now make low cost personalized service dog
tags.
Southpaw
Enterprises® – Founded in 1976,
they are dedicated to developing and manufacturing sensory integration
dysfunction & neurodevelopmental products that help therapeutic
professionals, people with special needs, their families, & other
professionals, solve problems or meet new challenges.
Wheelchair
Seat Covers™ – Decorative wheelchair seat covers made by a mom who has a teenage daughter with Rett Syndrome. Check it out. You can even pay with PayPal.
Weighted Bean Blanket – Learn about the calming and comforting
benefits of a hug from this
special blanket.
Non
Rett Syndrome links that are Important to Laura’s Dad
Clink on the logo above to find legal
services related to Patents, Copyright, Trademarks, Internet & Computer Law
matched with a unique sense to your business needs. KRIVOSHIK LLC offers over
a decade of extensive experience in Intellectual Property Law including all
aspects of Patents, Copyrights, Digital Intellectual Property, Trade Secrets,
Internet Law and Trademark Law, Intellectual Property Law is our only focus with
technical expertise in the all aspects of electronic, electrical,
communication, computer systems, software, Internet, biomedical
instrumentation, optical and the mechanical arts as well as all aspects of
Digital Intellectual Property Law, Copyright Law and Trademark Law.
®
Click on our logo above to explore Ignatz® to discover a unique synergism of old world professionalism with state of the art
technology where you will unearth many interesting facts, reference sources
& links.
™
Visit our
eBay store by clicking on the logo above. eBay is The World's Online
Marketplace®, enabling trade on a local, national and international basis.
For
the love of our Rett Angel
Laura
Amy
at Baba’s house with Skip her Service
(seizure & companion) Dog
on Russian Christmas (January 7th) August 27th
2008
September 12th
1993 –
On
Tuesday night April 13th 2010 at bed time Laura kept saying again
& again ‘take my picture, take my picture’.
She
would not stop so I finally did with my cell phone with only the 4 watt night
light on in her bedroom (no flash).
The
first time the picture was all black, I moved the night light & took this
second photograph, which I showed to Laura
and said ‘we can see
you now’, I almost never showed Laura the pictures on my camera let alone on my
cell phone.
Laura
then told me ‘thank you, I love you daddy’.
I gave her a kiss and said, ‘I love you too hon (honey),
please
go to sleep so you won’t be tired for school in the morning.’
Laura
loved going to the Midland School so
much that she was lost on snow days & holidays.
I
cannot believe that this is the last photograph of our beautiful angel we will
ever have.
I
love you Laura & always will.
Daddy
For the love of our special angel who we miss so very much &
always will..
Angels are Real... [Download
pdf file]
First shared in a
small part by Laura’s dad August 9th, 2007 and expanded April 23rd
2010.
Don’t weep at my grave... [Download pdf
file]
Read by Laura’s
little sister, Danielle 12, on April 23rd 2010.
Lost our special Angel... [Download pdf file]
Silent Angels (Life with a special needs child)... [Download pdf
file]
Written &
published by Laura’s mom.
Laura’s Story in Pictures (a not so Silent Angel)
Laura’s Garden (a butterfly memorial garden)
Please feel free to suggest a link or a pdf document etc. to
add. Please contact us at unicorn@ignatz.net.
Please
understand that this website is a negative profit venture, thank you.
Downloadable PDF documents require the
free Adobe Reader.
This web site is sponsored by 
®
and 
™.
Please explore Ignatz® to discover a unique
synergism of old world professionalism with state of the art technology where
you will unearth many interesting and helpful facts, reference sources
& links.
Please visit KRIVOSHIK LLC
for legal services
related to Patents, Copyright, Trademarks, Internet
& Computer Law focused on your business needs.
This web site
was designed, created & is maintained by David P. Krivoshik.
A limited, non-exclusive, revocable
license to link to hid web page without framing is granted. This license may be terminated at any time
without cause.
©1997-2018. Unicorn Meadows, Dayton, VA, USA. All rights reserved.
This web page was last
updated 28 January 2018