Batten Story | Northern Texas
Last Updated 2009-11-04 at 09:30:31
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Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.Production toots horn for ailing youngsters
Last Updated 2010-03-11 at 07:34:21
Seventy-six trombones will lead a big parade of theater lovers devoted to helping sick children.
The Music Man, to be presented Friday through Sunday in the Palace Theatre, marks the 53rd annual production of Pleasure Guild of Nationwide Children's Hospital, an all-volunteer group committed to raising money for the Hospice and Palliative Care program at the hospital.
Such pursuits have helped the family of Jenni Betz, whose daughter, Celia, has received hospice care for about a year.
The girl, who just turned 3, has Batten disease, a degenerative neurological problem with no known cure.
The Music Man, to be presented Friday through Sunday in the Palace Theatre, marks the 53rd annual production of Pleasure Guild of Nationwide Children's Hospital, an all-volunteer group committed to raising money for the Hospice and Palliative Care program at the hospital.
Such pursuits have helped the family of Jenni Betz, whose daughter, Celia, has received hospice care for about a year.
The girl, who just turned 3, has Batten disease, a degenerative neurological problem with no known cure.
Read more online (off-site link) Pavlo Nominated for a Juno Award
Last Updated 2010-03-05 at 08:16:14
We are proud and excited to confirm....
PAVLO, RIK EMMETT and OSCAR LOPEZ 's new CD:
"TRIFECTA"
has been NOMINATED for
"BEST INSTRUMENTAL ALBUM of the YEAR"
by the 2010 JUNO Awards
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On behalf of Pavlo, Rik Emmett and Oscar Lopez:
"It is with humble hearts and great appreciation that we say THANK YOU to all of you in the media and to those of you who: have interviewed us; took an interest in telling our story; have reviewed the album or our live show; OR to you that have shown us ANY small kindness or support by printing a concert date; or a picture; or spinning the album, etc. We realize that without your support, our fans; music lovers and greatest supporters may never have learnt of our endeavours.
THANK YOU!"
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TRIFECTA album - listen here:http://www.pavlorikoscar.com/music.php
Publicity Contact: Sandra Charamba - 416-303-3305 - sandra@pavlo.net
P.R.O. website:www.pavlorikoscar.com
P.R.O. Biography: http://www.pavlorikoscar.com/biography.php
Hi-Res Pics for Download:http://www.pavlorikoscar.com/photos.php
Tour Dates:http://www.pavlorikoscar.com/concerts.php
Video Bio:http://www.pavlorikoscar.com/concerts.php
You Tube: http://www.youtube.com/watch?v=V1GK5sb9los
Buy Album: http://www.pavlo.net/store/product_info.php/cPath/3/products_id/203?osCsid=be2f0da29df3b48eb6c222bef80a92b4
Album Description:
AN AMAZING GUITAR TRIO...
An amazing guitar trio of Mediterranean Magic, Triumphant Fusion & Hot Latin Fire has arrived. P.R.O.’s incredible musical chemistry was born out of the joy, respect and friendship found in the making of great music. Three artists from widely different backgrounds have forged an intense cultural melting pot of their unique styles.
5-Year-Old Girl Living With Rare, Fatal Disease
Last Updated 2010-02-23 at 07:36:43
CHICAGO (CBS) ― Batten disease is very rare, and it's deadly. Only four children in the Chicago area are known to have it. One of them is a little girl in the northwest suburbs. CBS 2's Jim Williams reports her parents are on a mission. Bridget Kennicott is 5 years old. She is fed through a tube and confined to a wheelchair.
The Global Genes Project
Last Updated 2010-02-22 at 11:25:59
WEAR JEANS TO SUPPORT WORLD RARE DISEASE DAY FEBRUARY 28, 2010
World Rare Disease Day is a time when the community of affected children and families come together to garner support for their efforts.
Please join the Global Genes Project in its support for World Rare Disease Day by wearing jeans. It's that easy!
Imagine lawyers in courtrooms, business executives in boardrooms, state legislators and others from all walks of life wearing jeans the week before or Friday before World Rare Disease Day – all to show their support for those affected by rare disease worldwide. www.rarediseaseday.us.
It can happen. And this simple act could help change the lives of children affected by rare diseases. Please also join us on facebook to share your efforts with the rest of the world – post photos, share stories and get people excited!
So help today! Wear your jeans!
World Rare Disease Day is a time when the community of affected children and families come together to garner support for their efforts.
Please join the Global Genes Project in its support for World Rare Disease Day by wearing jeans. It's that easy!
Imagine lawyers in courtrooms, business executives in boardrooms, state legislators and others from all walks of life wearing jeans the week before or Friday before World Rare Disease Day – all to show their support for those affected by rare disease worldwide. www.rarediseaseday.us.
It can happen. And this simple act could help change the lives of children affected by rare diseases. Please also join us on facebook to share your efforts with the rest of the world – post photos, share stories and get people excited!
So help today! Wear your jeans!
Family hopes daughter's struggle will give hope to others
Last Updated 2010-01-28 at 07:45:27
The living room couch has seen some wear. A blanket is draped on the end where the cushions are mashed down and has a broken back, but the owners aren’t ready to get it fixed yet.
“That was her spot,” Melinda Galen said, referring to her daughter Aleah “Allie.”
Allie, 12, was diagnosed with juvenile Batten disease – a rare neurological disease – when she was 6 years old. The disease affects eyesight and gross motor skills at first, eventually resulting in seizures, blindness, psychotic episodes and being bedridden.
“That was her spot,” Melinda Galen said, referring to her daughter Aleah “Allie.”
Allie, 12, was diagnosed with juvenile Batten disease – a rare neurological disease – when she was 6 years old. The disease affects eyesight and gross motor skills at first, eventually resulting in seizures, blindness, psychotic episodes and being bedridden.
Helping Give Hope to Hayden
Last Updated 2010-01-27 at 08:14:25
Imagine celebrating your child's fourth birthday, knowing she's not expected to live to be five. That's the reality for Christine Thelen.
"We weren't going to sit back and do nothing," Thelen told FOX 11. Two years ago, Thelen's daughter Hayden was diagnosed with Batten's disease. Thelen said her daughter could walk, talk and feed herself. But then, she started to regress.
"We weren't going to sit back and do nothing," Thelen told FOX 11. Two years ago, Thelen's daughter Hayden was diagnosed with Batten's disease. Thelen said her daughter could walk, talk and feed herself. But then, she started to regress.
Mishawaka family making every moment count for son with fatal disease
Last Updated 2009-12-10 at 14:44:59
Sometimes it's easy to take things for granted: Good friends, family, your health ― but a Mishawaka family has recently learned how fragile it all is, and they are making every moment count.
CBS News Story -- A Quest to Find a Cure
Last Updated 2009-12-04 at 07:42:28
November 14, 2009 6:04 PM
Uncommon illnesses, also known as "orphan diseases", affect millions of Americans, but drug makers are unwilling to develop a treatment. Terrell Brown looks at one family's quest to find a cure.
Jasper Duinstra suffers from Late Infantile NCL. This is the Duinstra's story and their fight to find a cure for their son and all children with LINCL.
Uncommon illnesses, also known as "orphan diseases", affect millions of Americans, but drug makers are unwilling to develop a treatment. Terrell Brown looks at one family's quest to find a cure.
Jasper Duinstra suffers from Late Infantile NCL. This is the Duinstra's story and their fight to find a cure for their son and all children with LINCL.
Michiana boy battles rare disease
Last Updated 2009-11-04 at 10:15:30
A little boy in Mishawaka is fighting a rare disease called Batten's. Tyler Allman is 8 years old and goes to Hum's Elementary. His fight is starting to garner a lot of attention, even though very few know anything about Batten's.
Disorder, funding to fight it both rare
Last Updated 2009-11-04 at 10:12:16
Celia Betz, 2 1/2 , has the infantile form of Batten disease, a rare neurological disorder that can't be treated and is always fatal. At an age when she should be racing from room to room with frantic joy, Celia is under hospice care. The red-haired child finds her greatest -- and sometimes her only -- comfort now in the lap of her mother or father. Her budding vocabulary has withered into silence, and her dark eyes see only light and shadow.Family works hard to make memories last
Last Updated 2009-11-04 at 10:08:46
Blue Springs, MO family bands together while coping with girl's degenerative, life-threatening disease. Haylee used to love doughnuts. "Her favorite was glazed doughnuts," says her mom, Clarissa Joyce. "She loved them. I'd bring them home from work." At first, the little girl would eat them on her own. Later, it got to the point that Mom or Dad would have to tear one up for her. After a while, they'd have to feed it to her. Now, there are no more doughnuts for Haylee, a 2 1/2 year-old with curly red hair. She is suffering from a genetic, neurological disease that's slowly taking away one life function after another and will cut her life short.Batten Disease stealing 2 young lives
Last Updated 2009-11-04 at 10:05:55
Chicago Tribue--September 16, 2009 Noah VanHoutan, a beautiful little boy with straight brown hair and green eyes, can't walk by himself anymore. He has seizures. His vocabulary has decreased to fewer than 10 words.
He is 5, and already his life is half over. Noah suffers from Batten disease, a genetic disorder that swoops down on a child who is developing normally and gradually destroys the brain. "We're in the fighting stage," said Noah's father, Tracy, a trader at the Chicago Board Options Exchange. "We think there's a lot in Noah left to save."
In the fight of their lives
Last Updated 2009-11-04 at 09:55:30
By Terri T. Johnson Almanac staff writer tjohnson@thealmanac.net
Five-year-old Drew Grady of Upper St. Clair Township is a normal, active little boy trapped in an uncooperative body. He has a rare fatal affliction, a progressive, degenerative neurological disease known as Late Infantile Batten. The odds are against him reaching adulthood. A few months ago, Drew could run and play and hit a baseball straighter and longer than any boy his age. "He was always so far ahead of kids his age," said his father Chris Grady, a teacher in the Sto-Rox School District. Now, he can walk only with assistance, said his mother Valerie Grady, a customer service representative for a Pittsburgh printing company. His speech is severely restricted and his hands and arms are positioned at an abnormal angle.
Five-year-old Drew Grady of Upper St. Clair Township is a normal, active little boy trapped in an uncooperative body. He has a rare fatal affliction, a progressive, degenerative neurological disease known as Late Infantile Batten. The odds are against him reaching adulthood. A few months ago, Drew could run and play and hit a baseball straighter and longer than any boy his age. "He was always so far ahead of kids his age," said his father Chris Grady, a teacher in the Sto-Rox School District. Now, he can walk only with assistance, said his mother Valerie Grady, a customer service representative for a Pittsburgh printing company. His speech is severely restricted and his hands and arms are positioned at an abnormal angle.
Follow BDSRA on Twitter!
Last Updated 2009-11-04 at 09:49:41
You can now follow BDSRA on Twitter. Please visit our Twitter site to stay connected with news and information from BDSRA. http://www.twitter.com/BDSRA
Awareness Days focus on Batten Disease
Last Updated 2009-11-04 at 09:43:23
Have you heard of Batten disease? Could you recognize its symptoms, or are you aware of how it affects people? The answer is probably not.
A Wish for Nicholas
Last Updated 2009-11-04 at 09:39:13
Nicholas Dainiak is being granted a wish through the NH Chapter Make-A-Wish Foundation. His wish? A service dog for him and his family. Watch the WMUR 9 news story to learn more.
West Michigan Family dealing with son diagnosed with Batten Disease
Last Updated 2009-11-04 at 09:37:18
The Geer family is interviewed by WZZM 13 answering questions about their son Jacob and his fight against Batten Disease as well as information on Batten Disease Awareness Weekend.
The Geer family was again interviewed, this time by WOOD TV8.
More from WZZM 13
More from WZZM 13
Illinois General Assembly Recognizes Batten Disease Awareness Days
Last Updated 2009-11-04 at 09:35:34
May 31, 2009-- BE IT RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE NINETY-SIXTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare June 6-7, 2009 Batten Disease Awareness Weekend in the State of Illinois and ask people of the State to look at ways in which they may help to combat this terrible disease.
Duinstra family being helped by Chicago school children
Last Updated 2009-11-04 at 09:31:32
May 15, 2009 (WLS) -- School children across Chicago are banding together to help a fellow student who is battling a rare and fatal neurological disease. The fundraising effort now under way will not only help 4-year-old Jasper Duinstra but could end up saving the lives of other children with this deadly disease.
Read more at Suntimes
Read more at Suntimes
Batten Story | Northern Texas
Last Updated 2009-11-04 at 09:30:31
Some North Texas families are trying to raise awareness about a rare neurological disorder known as Batten disease. The condition, most often diagnosed in children, occurs when both parents are carriers of a defective gene.
Columbia Access Arts provides accessible environment for special needs
Last Updated 2009-11-04 at 09:28:28
A plastic tub mounded high with stamps of different imprints separated 15-year-old Austin Hein from his mother, Lugine Hein. Over and over, Austin pressed the stamps into a slab of gray clay. When the slab was covered with stamp imprints, Lugine took it and pressed it into a bowl, then put another piece of clay in front of her son.With a little help, special kids score.
Last Updated 2009-11-04 at 09:21:42
The Cat5 Canes bring hockey to children often left out of team sports.Taylor's Tale and Batten Disease research
Last Updated 2009-11-04 at 09:18:33
About 150 University of North Carolina (UNC) and NC State University (NCSU) fans banded together at Blackfinn American Saloon in uptown Charlotte on the afternoon of January 31 to watch the in-state rivals'; first match-up of the men's basketball season and support Taylor's Tale. The event was supported by the local UNC and NCSU alumni clubs and was covered by local media, including twice on the local CBS affiliate and three times on the ABC affiliate. Halftime festivities included a video featuring Taylor, door prizes and a raffle. Tip-off for Taylor raised nearly $2,500 for Taylor's Tale and Batten Disease research.
"Thanks to the Tip-off event committee, Blackfinn for partnering with us on this fantastic event and to all those who donated door prizes and raffle items! Taylor's Tale will host a second Tip-off for Taylor event on March 8 when North Carolina and Duke meet in the last game of the regular season."
"Thanks to the Tip-off event committee, Blackfinn for partnering with us on this fantastic event and to all those who donated door prizes and raffle items! Taylor's Tale will host a second Tip-off for Taylor event on March 8 when North Carolina and Duke meet in the last game of the regular season."
Taylor's Tale is a non profit 501(c)3 organization
Last Updated 2009-11-04 at 09:11:46
Taylor's Tale is a non profit 501(c)3 organization dedicated to funding research and raising awareness about Batten Disease, please join them at Blackfinn Saloon at the Epicentre downtown Charlotte for a great time and a great cause!!!!!
While Children Suffer From Degenerative Disease, Parents Search for a Treatment