chargesyndrome.org
Resources | Charge Syndrome Foundation
http://www.chargesyndrome.org/resources.asp
Genetics: Diagnosis, Testing and Recurrence. Our Role & Impact. More Ways to Help. Sign Up for Our eNews. Finding information about CHARGE syndrome can be a daunting task. You might be looking for something specific (medical information, for example) and don’t know where to start. OR you. We hope that this page gives you a good start and guides you to what you are looking for. We invite you to suggest other resources for inclusion here so that others can learn from your experience. A packet of informatio...
txhandsandvoices.org
Texas Hands & Voices :: Multiple Disabilites
http://txhandsandvoices.org/txhv/resources/multiple-disabilites
Sometimes our children have multiple exceptionalities that affect their learning, social skills or emotional health. Here is an article about "deaf plus" on Hands and Voices HQ website. Http:/ www.handsandvoices.org/comcon/articles/deafplus.htm. And one from Gallaudet University's Clerc Center. Also, these links may help you. If you do not find what you are looking for or have a suggestion for addition information that we have not included here or in the links on the sidebar, please contact us at. The mi...
familytraditions-jali.blogspot.com
Family: Our Jady
http://familytraditions-jali.blogspot.com/p/our-jady.html
Making Memories and Traditions. From the writings of Jadyn's father, Josh. Jadyn was brought into this world on March 9, 2007. She was introduced to us in about 2 secs. The nurse that was holding Jadyn called for assistance from another nurse. I asked the doctor if everything was okay and he assured me it was. Jadyn left the room and was taken to get what we thought was "cleaned up". We are still following our leader and we know that through Him all things are possible.". Pictures from a CHARGE retreat:.
lilyvoelkel.com
12th International CHARGE Syndrome Conference | Lily Voelkel Foundation
http://www.lilyvoelkel.com/12th-charge-syndrome-conference
Skip to main content. 12th International CHARGE Syndrome Conference. 12th International CHARGE Syndrome Conference held at the Chicago Renaissance Schaumburg Hotel on July 30-August 2, 2015. Thursday, July 30, 2015 (All day). Friday, July 31, 2015 (All day). Saturday, August 1, 2015 (All day). Sunday, August 2, 2015 (All day). Aug 5-7, 2016. 13th Annual International CHARGE Conference. July 27-30, 2017. Rosen Shingle Creek Hotel, Orlando FL.
lilyvoelkel.com
A Day Not Soon Forgotten... | Lily Voelkel Foundation
http://www.lilyvoelkel.com/a-day-not-soon-forgotten
Skip to main content. A Day Not Soon Forgotten. Matthew 17:20 If you have faith as small as a mustard seed, you can say to the mountain ‘Move from here to there’ and it will move. Nothing will be impossible for you. What a day February 7, 2013 was! We met Orion and Oliana two exceptional, steadfast examples of personal courage and unconditional love just like our Lily. It was so fulfilling to make a stamp in the homes of these children’s’ lives. Miss Oliana. A 5-year-old spirited young girl. She ...Thank...
lilyvoelkel.com
Lily's Story | Lily Voelkel Foundation
http://www.lilyvoelkel.com/lily-voelkels-story
Skip to main content. Lily Korinne Voelkel was born on June 23, 2009 weighing 6 pounds, 13 ounces and measuring 19 inches long. Lily died on May 14, 2012 after almost 3 years of an exceptionally courageous journey of various medical conditions. Lily was born with several other anomalies to include cranio-facial deformities and optic deletions. Lily was trached and on a ventilator because she suffers from chronic lung disease. She had various stomach anatomy issues and feeding issues. She ate ...After con...
lilyvoelkel.com
CHARGE FAQ | Lily Voelkel Foundation
http://www.lilyvoelkel.com/charge-faq
Skip to main content. CHARGE Syndrome is a complex genetic condition seen in about 1 in 10,000 births. A diagnosis of CHARGE is made using major and minor clinical features or by finding a mutation in the CHD7 gene. It is sporadic with no other affected family members. Oloboma of the eye. Tresia of the choanae. Etardation of growth and/or development. Enital and/or uriniary abnormalities. Ar abnormalities and deafness. Please visit chargesyndome.org. Aug 5-7, 2016. July 27-30, 2017.
lilyvoelkel.com
What's New | Lily Voelkel Foundation
http://www.lilyvoelkel.com/whats-new
Skip to main content. Lilliworks Active Learning Foundation. Provides guidance, resources and tools of active learning for development of those with blindness, cerebral palsy, developmental delays, deafblindness and other significant disabilities. Sign up to receive the Braille Special Collection for Kids Begin your own home Braille Library at no cost call 1-800-BRAILLE. 20 Stay Put Activities for developmentally young children with sensory impairments and other special needs. Have an iPhone or iPad?
lilyvoelkel.com
Videos | Lily Voelkel Foundation
http://www.lilyvoelkel.com/videos
Skip to main content. Aug 5-7, 2016. 13th Annual International CHARGE Conference. July 27-30, 2017. Rosen Shingle Creek Hotel, Orlando FL. The most beautiful things in the world cannot be seen or even touched, they must be felt with the heart." - Helen Keller. 2016 The Lily Voelkel Foundation, a 501c(3) not for profit organization.
lilyvoelkel.com
iPad Applications | Lily Voelkel Foundation
http://www.lilyvoelkel.com/ipad-applications
Skip to main content. The iPad applications I have listed below are a compilation of tested applications with special needs children that have been proven to provide positive developmental response. All you have to do is go under the App Store on your iPhone or iPad and type in the game names below. Some are free, while others charge a minimal fee. In addition, there are applications here that can be enjoyed by deaf and blind children. Awesome (by Tiny Mobile, Inc.). Baby Touch and Play. Aug 5-7, 2016.
