L.T.’s Latest News..

L.T.s LATEST NEWS…         COMING SOON ..stay tuned…UNDER
CONSTRUCTION…

MAY, 2012

MONTHLY AWARENESS-
The month of May is a busy Month for Awareness stuff.   Here is a website that you can key into that lists all’  ”AWARENESS MONTHLY CALENDER( http://www.rubber-bracelets.com/awareness-monthly-calendar.htm#may).”  Some notable ones are, Asthma, Arthritis, Stroke, National Digestive Disorders,  National Mental Health Month and lots more…

GRIEVING SUPPORT;
BABBLE ..For A New Generation of Parents has put out an Article
10 Websites All Baby loss Parent’s  should bookmark for Grieving ,Healing, and Support..
http://blogs.babble.com/being-pregnant/2012/04/24/10-websites-for-baby-loss-mom/
Thank you Kristine McCormick for the info..

LOVE TO KNOW- also puts out a cool set of Grieving Sites.  This list is a broader set with not just Parent Loss but other types in mind ( Top 10 for Grieving)
http://www.lovetoknow.com/top10/grief-support.html  

QUICK LINKS
Here are some Quick Links..
Madisons Foundation(Moms And Dads In Search Of Needed Support)- This one is awesome because it has lots of links for families affected by Rare Disorders/Diseases
http://www.madisonsfoundation.org/

RARE DISEASE SEARCH ENGINE- This site has all sorts of Links to Rare Diseases/Disorders..
http://www.raredisease.org/

BEN’S FRIENDS- Awesome site where Folks can connect with communities of rare diseases/disorders ...
http://bensfriends.org/

CHD /SPECIAL NEEDS News Links-  Here is some sites for recent news  on CHD(congenital heart defect/s)/& Special Needs.  This is just a started set…if folks would like to add their own please don’t be shy…
Kristine McCormicks’ CHD SCOOP-It pge
http://www.scoop.it/t/congenital-heart-defects

SPECIAL NEEDS Xtreme(aka lt4swanchd)-Mine & My Sons’ Scoop-It pge-
http://www.scoop.it/t/undiagnosed-and-rare-diseases

FACEBOOK SITE NEWS….
This list is just a started list of favorite fb sites…Folks, don’t be shy, you are more than welcome to add to this list…
http://lt4swanchd.wordpress.com/favorite-fb-sites/  

There is so much more out there that needs to be listed but this can help jump start the process….MORE COMING…stay tuned..

Laura C.(Xtreme Survivor) &
Proud Mom to Xtreme/CHD Angel, T.W.C.(10-11-94 to 6-15-95)

warning..
Please do not use this site to diagnose and or treat a Patient, Contact your family doctor for more information and direction…Thank You.. 

Warrior’s/Angel’s/& Sibling’s Tribute Pages…

Warriors/Angels/Siblings

Hello Folks,

Our Special Need’s Xtreme site has A “Warrior/Angel Tribute Page,”….and a “Sibling Tribute Page.”
If you would like your Warrior & or Angel and their Siblings on our Tribute Page’s please don’t be shy…
We welcome all Warrior’s & or Angels and their families.  It’s important to let folks know that we recognize Our Warrior’s/Angel’s/ Sibling’s  Battle’s in the War against Special Need’s and or Congenital Heart Defect’s.  

Warrior’s/Angel’s Tribute page addy
http://lt4swanchd.wordpress.com/l-t-s-walltribute/ 
 
Sibling Tribute page addy
http://lt4swanchd.wordpress.com/sibling-tribute/

Laura C.(Xtreme Survivor)
Proud Mom to Xtreme/CHD Angel, Timothy(10-11-94 to 6-15-95)

Gratitude and Thank you’s..

Category; Gratitudes

Hello folks,
I’ve been getting a lot of comment’s on our website here and wanted to extend a huge THANK YOU…It means a lot to me that folks are responding with such incouraging words of support.  

If you would like to follow us on Facebook here is our Addy
“Special Need’s Xtreme(aka lt4swanchd)”
 https://www.facebook.com/#!/pages/Laura-Tim-4-SWAN-CHDlt4swanchd/155963707818553

Laura C./Special Needs Xtreme(aka lt4swanchd)
Proud Mom to Xtreme/CHD Angel, Timothy

New Name/L.T.s Quick News Links..

L.T. News….Quick News Links/ New Name

Welcome to  SPECIAL NEEDS  xtreme

A.K.A. …lt4swanchd

SPECIAL NEEDS

Xtreme…stands for
Everything having to do with “AWARENESS 4 UNDIAGNOSED/
RARE/SPECIAL NEEDS DISORDERS AND CONGENITAL HEART
DEFECT/S …

I’m continuing to raise awareness for
SWAN(syndrome without a name) & Congenital Heart Defects(chd’s).
Nothing has changed in that respect.  I just wanted to put more of
a L.T. touch to it..  Hopefully that makes sense…..

REMEMBER THAT SWAN-USA IS AN ORGANIZATION ..
FOR MORE INFO ABOUT SWAN-USA…PLEASE VISIT THE FOLLOWING LINK
www.undiagnosed-usa/org

SPECIAL NEEDS xtreme(a.k.a.  lt4swanchd) is not an organization.  We are only an Awareness site with tons of heart/soul..

NOTE
Im keeping the same E addy/ & FB SITE addy so to speak until further notice so that our fans don’t get confused…

I WILL BE UPDATING AND REARANGING SOME STUFF WITH PAGES/INFO…doing some housekeeping..but don’t panik ..info and awareness stuff, like I mentioned before, is the same

THANK YOU FOR BEING PATIENT AND  for being apart of our Awareness Project..

L.T.s QUICK NEWS LINKS

An awesome website called “Scoop-It” is allowing folks to find, & read current events on favorite topics such as Congenital Heart Defect/s and Special Needs as well as countless other news….Once your into the site it will also allow you to create your own “Scoop-It” page so that you can do your own Awareness on your favorites.

Here are a couple of “Scoop-It” pages you can key into if you are interested in Congenital Heart Defect/s and Special Needs

NEWS…updated news of chd/special needs Follow;

My Page, “Special Needs Extreme(aka lt4swanchd).”  Covers such topics as Congenital Heart Defect/s and Special Needs Awareness http://www.scoop.it/t/undiagnosed-and-rare-diseases
NOTE…I’m still learning the ropes on how to do “Scoop-It” …I might have to have a separate page for CHD’s …stay tuned…

More on Congenital Heart Defect/s

YOU CAN FOLLOW;

Kristine Brite McCormicks’ Page
 http://www.scoop.it/t/congenital-heart-defects

………………………………………………………………..

Here is another really cool QUICK LINK;
DISABILITY SCOOP(gives quick updates on the latest on Special Needs News)
http://www.disabilityscoop.com/

…………………………………………………………………..
Laura C./SPECIAL NEEDS xtreme(aka lt4swanchd)
Xtreme survivor and
Proud Mom to Xtreme/CHD Angel, Timothy

WARNING..
Please do not use this site to diagnose
and or treat a Patient.  Please see your
family doctor for more info and or direction…
T/Y
Laura C.

FEB 29th Wear Jeans …

RARE DISEASE/GLOBAL GENES PROJECT

 We are closing in on WORLD RARE DISEASEE AWARENESS DAY which is on FEB. 29th.  It’s in honor and rememberance to all of our Rare Disease/Disorder/Undiagnosed Warriors, Angel’s and their families.    Did you know that there are 7k identified Rare Disease with No Cures.  350 million people have a Rare Disease -More than all Cancers and Aids Combined.  Less than 5% of Rare Diseases have any therapies or treatments….

WANT TO GET INVOLVED;  LEARN WAYS ON HOW YOU CAN HELP PLEASE VISIT 
    http://www.globalgenesproject.org/wrdd.php

Please Visit These Links too…

Rare Disease Day
www.rarediseaseday.org/      

Children’s Rare Disease Network
http://www.crdnetwork.org/

The Global Genes Project
www.globalgenesproject.org/

                                                  
Laura C. special needs survivor/lt4swanchd
Proud Mom to special needs/CHD Angel, Timothy(10-11-94 to 6-15-95)
LTs News/swan stuff 

CHD Awareness Wanted…!!!!!!

LTs News/CHD’s

February 7th through the 14th is Congenital Heart Defect Awareness Week…..CHD’s are the #1 Birth Defect and the #1 cause of Birth Defect related deaths…1 in 100 babies are born with a CHD, thats 40,000 Babies born a year. 4,000 of the Kiddo’s born with this birth defect will not see their first birthday…only a fraction of a $1.00 is given towards Heart Research actually goes to Congenital Heart Defects…How many commercials do you see on a given day, month, year about C.H.D.’s.  Infact I don’t remember seeing any since the first of the year.   Now here is a question for ya?   How many Commercials do you see about Cancer Awareness ?  No disrespect against the Cancer Warriors and Angels but it is clear there is a lot of work needed to spread Awareness about CHD’s too…As a Proud Mom of a CHD Angel help me spread CHD Awareness by Reposting…Thank you ♥.. Want to learn more ? Go to these pages on my site;

http://lt4swanchd.wordpress.com/c-h-d-what-is-it/

 http://lt4swanchd.wordpress.com/chd-special-note/

 http://lt4swanchd.wordpress.com/chdsignssymptoms/

 http://lt4swanchd.wordpress.com/chd-paws/

 Learn Ways to Help Visit;
www.childrensheartfoundation.org/

 Laura C./special needs xtreme(aka lt4swanchd)

Undiagnosed Disease Program(NIH)

ATTENTION……….
Awesome News for folks of Undiagnosed Disorders/Syndromes…

 

Just Got word from SWAN-USA…

 

As of December 1st, 2011  the Undiagnosed Disease Program(UDP) has started accepting applications again.  To find out more about the UDP go to.

 

http://rarediseases.info.nih.gov/undiagnosed

Or go to SWAN-USA
http://www.undiagnosed-usa.org/   
 
The Undiagnosed Disease Program offers families a chance at a possible diagnosis.   Once you get your application in and approved there will be a date given when you come in and get evaluated by lots of specialists and Genetisists.   Sometimes, unfortunetly, a diagnosis is not possible during the week of evaluation.  Please don’t be discouraged though.   For some families the diagnosis comes a few weeks later, maybe months later…and yes sometimes its right back where you started.   Not everyone will receive a diagnosis unfortunetly but like I mentioned earlier its an option and can give the docs a further set of clues to work from.   Stay with it and Keep reaching out.  

NOTE;   Because of the amount of applicants that the NIH has to go through ..The Process of approval will most likely take sometime…Stay Patient and try and not get Discouraged…Thank you

Laura C./lt4swanchd