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    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 Kingwood Township (Frenchtown), NJ.

Camp Horizon is a respite summer day camp for ages 8-16.

There is no cost for either program but you need to be DDD registered.

The ARC of Hunterdon can assist you in becoming DDD registered.

 

Please click on the title link above for full details.

 

 


 

 

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T   Winter Family Rettreat NJ & Surrounding Region   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 Institute of Health Rett Syndrome Booklet-2006 [Download pdf file 12 pages 8˝ x 11]

 

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

[Download pdf file]

 

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

 

Internal Revenue Service Link on information & publications regarding disabilities & handicapped children

 

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 New Jersey & the surrounding region]

 

Northwest Rett Syndrome Foundation [Members from Oregon, Washington, Idaho, Northern California & Canada]

 

Rett Syndrome Association of Illinois [Members from Illinois & some out of state members]

 

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]

 

Canada Rett Syndrome Society of Alberta [In English]

 

             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

 

Our Rett Syndrome Web Site

 

Rett Angels

 

Rett Syndrome Magazine Rett Syndrome on-line Magazine.

 

Rett Syndrome Parent

 

Wikipedia


Rett e-mail Lists

 

 

  IRSF RettNetIRSF 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

 

 

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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.

 

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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.

 

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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 Krivoshik

 

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                   at Baba’s house                        with Skip her Service (seizure & companion) Dog

    on Russian Christmas (January 7th)                                    August 27th 2008                           

 

 


September 12th 1993 – April 17th 2010

 

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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.



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xn_dgwby%5b1%5dThis web site is sponsored by ignatz small® and logo K .

 

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.

 

©1997-2014. Unicorn Meadows, Ringoes, NJ, USA.  All rights reserved.                                                                    

This web page was last updated 17 April 2014