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Chromosome 18 Registry & Research Society
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Autism Dog Services
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Please! help us fund a dog for Katie, donations may be made directly to Autism dog services for Katie P's dog at the link above or you may email me here

Autism dog services on Facebook click: Here


The UTHSCSA Chromosome 18 Clinical Research Center
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For Our Forum
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Read about Eli's story and for information on Ring 14
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Equipment and therapies



Introducing the Einstein Challenged Society
"The ONLY limits are based upon ABILITIES"
21 million plus in North America with the genetic anomaly Trisomy 21, and NOT A SINGLE ONE SHOULD BE HELD BACK BECAUSE OF IT

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National Organization
for rare disorders
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Education


Pianist for all Occasions
Anthony Franchitto
Located in Toronto Canada 416-272-9449


Medical issues


Accessible Vacation travel planning


Governments and legislation concerning disabilities


For those of you who require assistance in Spanish please check out this Chromosome 18 Spanish forum......Para aquellos de ustedes que requieren la ayuda en espanol por favor comprueba este Cromosoma 18 foro espanol. Click Here...Chasquido Aqui



Genetic Alliance
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C18Live
A place where individuals with Chromosome 18 anomalies who are 16 and over can email each other to share their stories and offer support and encourage to one another.
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Chromosome 17.org support and advocacy organization dedicated to Chromosome 17 abnormalities.
Click Here


Contact me


Free online Translation of text to many different combination of languages...
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Artist LaVonne Petit unique creations!
Paper Eggs


If you are a individual, family member or even a friend of someone who has been newly diagnosed with a Chromosome 18 abnormality please email me and I can try to help you find other families with the same syndrome!

Mail Here.

We are here for all abilities! If you would like information posted about your syndrome or disorder please email me for info. This page is a resource center for persons with ANY ability.

 

Our mission is to bring awareness and support to all abilities!!



Check out all the different types of information on our Forum here!!


A Chromosome

Click here for a detailed explanation of what a chromosome is(Flash presentation)

Welcome

My name is Lorrine, along with my children I make our home in Canada.
I am the founder and administrator of this site, please feel free to look around. Our forum is full of useful information! I decided to build this web site as an information sharing system for persons and families with disabilities, including but not limited to chromosome abnormalities of Chromosome 18.

Our main focus areas are education, travel, health and networking with others.

Please take the opportunity to share with us any information you think may be of benefit to others.

Our wish is to help anyone who needs information, we will do our best to help you find out what you need through our network of parents and individuals. Some answers don't come easy or ever come at all but we will try our best!



My beautiful girl!

Canada

Ability Online was founded in 1991 by Dr. Arlette Lefebvre, a child psychiatrist at Toronto's Hospital for Sick Children. The organization relies exclusively on donations from foundations, community organizations, and generous individuals. Mission Ability Online's original mission was to enhance the lives of children with disabilities or illness by providing an online community of friendship and support.

Ability Online believes:

- that every child has the right to play, to learn, and to be part of society
- that computer literacy opens doors for all youth, but it is particularly critical for those with disabilities as it allows them to participate as equals
- in learning from each other's experiences and offering our members the fullest spectrum of first-hand information possible

After 20 years in service we are looking to moving onto new frontiers to further develop our community.

Ability Online is a free, monitored & secure online community that welcomes kids, teens & young adults of all abilities. Find a friend or be a friend to someone just like you! Separate sections for different age groups & specialized tools help address transitional needs & challenges. Parents and professionals welcome.

In addition to our skill development modules and message forums, did you know that we also provide support and resources for the families of the children we reach out to, as well as the healthcare and education professionals who work with them? Ours is an all-inclusive, welcoming place full of opportunities for friendship, support and empowerment. It is a place that is available 24/7 from any computer or device with Internet access. And it's free!

Here are just a few of the modules you will see once you register:

Age and topic specific forums for ongoing discussions
Homework Help
Bully Bouncers
Friendship Builder
Games
Fun stuff- introduction to sports and recreation
Tumblereadables -online library of books for all ages
Resources and links

and so much more. Just register (yes we will screen you which involves a phone call -but guess what -that procedure has kept our kids safe for over 20 years! Worth the wait don't you think?) and then login and explore the possibilities. But if you need help -just ask. Email (information@abilityonline.org) call (toll free 1-866-650-6207) or even fax -1-866-829-6780 and we will do our best to answer any and all of your questions. Together we can and will make a difference!


www.abilityonline.org


**Update** The Chromosome 18 Registry & Research Society Annual Chromosome 18 Conference will be held at the Stamford Marriott Hotel & Spa in Stamford, CT: July 6 - 9, 2014

"About Chromosome 18 Registry and Research Society
The Chromosome 18 Registry and Research Society is a lay advocacy organization composed primarily of the parents of individuals with one of the chromosome 18 abnormalities. We are also proud to count among our members affected individuals, extended family members and professionals. Membership is open to any interested person. We are a 501(c)(3) non-profit, tax-exempt public charity.

Our work is supported by memberships and donations from individuals and charitable organizations. We have met the strict criteria for fiscal responsibility set by the Combined Federal Campaign."
The above quote is taken directly from the Society's web page. It can be found at this address:

www.chromosome18.org


**A recent submission, a Mom has submitted some links about Aspergers and different disorders her daughter has, please take the time to check these out, there's a lot of useful info there! For the following syndromes and disorders click here.
Asperger's Syndrome
Scheuermann's Disease
Scoliosis
Trichotillomania ( hair-pulling disorder)
Sensory Deficits - Good starting point


"Heaven's Very Special Child".

A meeting was held quite far from Earth,
It's time again for another birth.
Said the angels to the Lord above,
This special child will need much love.

Her progress may be very slow,
Accomplishment she may not show
And she'll require extra care
>From the people she meets down there.

She may not run or laugh or play,
Her thoughts might seem quite far away,
In many ways she won't adapt
And she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please, Lord, find the parents who
Will do this special job for you.

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love,
And soon they'll know the privilege given
In caring for their gift from heaven;
Their precious charge so meek and mild
Is "Heaven's Very Special Child".


*submitted by Lorie



WET PANTS

Come with me to a third grade classroom.....

There is a nine-year-old kid sitting at his desk and all of a sudden, there is a puddle between his feet and the front of his pants are wet. He thinks his heart is going to stop because he cannot possibly imagine how this has happened. It's never happened before, and he knows that when the boys find out he will never hear the end of it. When the girls find out, they'll never speak to him again as long as he lives.

The boy believes his heart is going to stop; he puts his head down and prays this prayer, 'Dear God, this is an emergency! I need help now! Five minutes from now I'm dead meat.'

He looks up from his prayer and here comes the teacher with a look in her eyes that says he has been discovered.

As the teacher is walking toward him, a classmate named Susie is carrying a goldfish bowl that is filled with water. Susie trips in front of the teacher and inexplicably dumps the bowl of water in the boy's lap.

Now all of a sudden, instead of being the object of ridicule, the boy is the object of sympathy. The teacher rushes him downstairs and gives him gym shorts to put on while his pants dry out. All the other children are on their hands and knees cleaning up around his desk. The sympathy is wonderful. But as life would have it, the ridicule that should have been his has been transferred to someone else - Susie.

She tries to help, but they tell her to get out. You've done enough, you klutz!'

Finally, at the end of the day, as they are waiting for the bus, the boy walks over to Susie and whispers, 'You did that on purpose, didn't you?' Susie whispers back, 'I wet my pants once too.

'May God help us see the opportunities that are always around us to do good..

Remember.....Just going to church doesn't make you a Christian any more than standing in your garage makes you a car.

Each and everyone one of us is goes through tough times, but God is getting ready to bless you in a way that only He can. Keep the faith.
Lets all help eachother!

* Thanks to Lorie S for sending this to me, everyone needs a little boost of inspiration from time to time!!


Listen to an inspirational young man, Justin Hines is a fellow Canadian and a true talent. Click here.

"It's not the height of the wall, but the hammer that you swing"
-Justin Hines

"Life does not have to be easy to be wonderful."
- Unknown

"Those who bring sunshine to the lives of others cannot keep it from themselves."
- James M. Barrie

"Happiness is someone to love, something to do, and something to hope for."
- Chinese Proverb

"Wherever there is a human being, there is an opportunity for kindness."
- Seneca



IT MATTERS TO THIS ONE

As I walked along the seashore, this young boy greeted me. He was tossing stranded starfish back to the deep blue sea. I said, "Tell me why you bother, why you waste your time this way. There's a million stranded starfish,
does it matter anyway?"
And he said, "It matters to this one. It deserves a chance to grow. It matters to this one, I can't save them all I know. But it matters to this one, I'll return it to the sea. It matters to this one,
and it matters to me."
I walked into the classroom, The teacher greeted me. She was helping
Johnny study, he was struggling I could see. I said, "Tell me why you bother, why waste your time this way. Johnny's only one of millions,
does it matter anyway?"
And she said, "It matters to this one, he deserves a chance to grow. It matters to this one, I can't save them all I know. But it matters to this one,
I'll help him be what he can be. It matters to this one,
and it matters to me."

- Author Unknown



Please keep in mind this is a group of parents and individuals who are sharing, any information you use is at your own judgment and risk. Please use the info wisely and seek medical advise from a licensed physician before beginning any new treatment.
*Disclaimer
The information contained in this website and any linked pages and linked forum are for general information purposes only. The information is provided by Tetrasomy18p.ca and whilst we endeavor to keep the information up-to-date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the website or the information, products, services, treatments, opinions or related graphics contained on the website for any purpose. Content is our opinion and should not be relied upon soley. We are not responsible for expressed opinions connected to this site therefore, any reliance you place on such information is strictly at your own risk. Any expressed opinions by anyone who is associated with this site are their own and Tetrasomy18p.ca, its administrators, affiliates or members are not responsible.

 

This is Tetrasomy 18p, 4 P arms of Chromosome 18 instead of 2
A detailed explanation can be found here on the Registry site.


A chromosome is made up of 2 arms and a center section, the top or smaller of the arms is called the P arm, the bottom or larger of the arms is called the Q arm. the center that 'glues' the 2 arms together is called the centromere.

*This web site is dedicated to

Samantha Martin

our Canadian sister in Tetrasomy 18p who at age 13 got her Angel wings and now watches over us all.



 


Shadowkicks Taekwondo

Special Needs - Parents/Guardians (or designated adult) must accompany any special needs child under the age of 13, as well as those that require additional assistance.

Please keep checking back for further updates on start dates and registration times.



Highly recommended!


Nightshade CreationsA~z(A^ personalized stationery



Nightshade Creations™ personalized stationery




Toll Free Helpline for Travelers with Disabilities


A new helpline number designed to assist travelers with disabilities and medical conditions, prior to getting to the airport.

Click here

Vital card® An emergency information card which in my opinion is a necessity for special needs travel.


 

Variety village is much more than a fitness and life skills facility. It is a place where everyone of all abilities can develop independence, self-confidence and a feeling of belonging. It is also a place that inspires dreams...Scarborough, Ontario.A~


 

DrugWatch.com is a comprehensive online medical database featuring information about thousands of medications currently on the market or previously available worldwide. By providing extensive information about side effects, drug interactions, FDA recalls and drug alerts, DrugWatch.com helps patients and consumers make educated decisions about their medications and treatment options.


 

Tetrasomy 18p.ca products are available HERE! Please check out my online store for items, all profits go to the Chromosome 18 Registry and Research society!! A~

 

Medic Alert Canada Important news release for Ontario
Medic Alert Worldwide Links all over the world!


Click here for John's Tetrasomy 18P site!


 

Angels of Hope a nonprofit organization that offers free crocheted angels for anyone in need of hope


RateMDs.com allows patients to rate and read about their doctors and dentists. I've used it many times and find it very very useful! USA, Canada, UK, AU/NZ and IN


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