Batten Disease Support & Research Association

Join Us in Raising Awareness for Batten Disease During Batten Disease Awareness Weekend June 1-2, 2013

Lisa — Fri, 24 May 2013 18:03:08 +0000

We all know how important awareness is to fight and cure Batten disease. Here are some ideas for you to share with family and friends to bring awareness to your community:

> Click Here to Download Your Batten Disease Awareness Weekend Posters:

BDAW Poster - Print this as a poster for your office cubicle or upload the jpg as your Facebook picture.

BDAW Add Your Family Poster (click here to download) - This version allows you to add your family photo for a custom poster. Once you insert your photo into the poster, save it as a picture to upload to Facebook.

> Honor Your Loved Ones Through Action By:

♦ Increasing visitors to www.bdsra.org by adding the link to your email account signature, which encourages others to view the link. Then send an email about Batten Disease Awareness Weekend to friends, family, co-workers and neighbors with the web address.
♦ Contributing online to Batten disease research at www.bdsra.org. Click Donate Now!
♦ Update your Facebook account to encourage your FB community to learn about Batten Disease Awareness Weekend by visiting www.bdsra.org.
♦ Asking members of your church, synagogue, community clubs or sports teams to join you in sending an email or FB message about Batten Disease Awareness Weekend with the link to BDSRA’s website.
♦ Asking 10 people to donate $10 to BDSRA – and ask them to ask their friends to do the same – during Batten Disease Awareness Weekend.

Marci E. Hassell

Lisa — Thu, 23 May 2013 19:32:50 +0000

Juvenile – CLN3
Birth Date: 03/14/1991
Deceased Date: 03/09/2013
Location: Evansdale, IA, U.S.

Run for Hope & Fun in the Sun

Lisa — Sun, 19 May 2013 13:26:55 +0000

IT’S ALMOST HERE!!!
The 4th Annual
Run for Hope & Fun in the Sun Family Fun Fest
Click here for details

Battin’ For Batten

Lisa — Fri, 17 May 2013 17:32:52 +0000

The Third Annual Battin’ for Batten Softball Tournament benefiting BDSRA will be held May 17-19 at the SKA Baseball Fields in Commercial Point, Ohio.

24 softball teams will match up across three days of play. A brief ceremony at 9:00 a.m., Saturday, May 18, will honor the memory of Mariah Crawford, to whom the tournament is dedicated.

For additional information contact Rick Asher at kasher@columbus.rr.com.

Hannah Rodgers

Lisa — Wed, 15 May 2013 13:59:53 +0000

Juvenile – CLN3
Birth Date: 02/06/2005
Location: Boise, ID, U.S.

Holly Rebecca Gordon

Lisa — Wed, 08 May 2013 13:44:34 +0000

Late Infantile – CLN2
Birth Date: 12/21/2007
Location: Efland, NC, U.S.

2013 Conference Program Now Available

Lisa — Tue, 07 May 2013 22:36:10 +0000

BDSRA’s Annual Conference
July 18-21, 2013 at the Nashville Airport Marriott.
A tentative 2013 Conference Program can now be found on our Conference page.

Also, check out sponsor opportunities to support the conference by clicking here.

Joey Rankin

Lisa — Wed, 01 May 2013 17:51:03 +0000

Juvenile – CLN3
Birth Date: 01/08/2005
Location: Goshen, OH, U.S.

Kiaana Brown

Lisa — Wed, 01 May 2013 15:32:24 +0000

Visit: Everyday Hero

Learn more about Kiaana:

Adelaide Now
Daily Telegraph

Kiaana Brown

Lisa — Tue, 16 Apr 2013 14:26:44 +0000

Disease Form: JNCL
Birth Date: 04/17/1995
Location: Adelaide, Australia

Holding Onto Kate

Lisa — Tue, 02 Apr 2013 19:03:22 +0000

To create awareness of, and work towards a cure for, Batten disease

Visit site

BDSRA Practice Guideline RFP Open until September 1, 2013

Lisa — Mon, 01 Apr 2013 19:36:35 +0000

Practice Guidelines for the management of Batten disease. BDSRA seeks to fund the development of practice guidelines for the diagnostic confirmation and management of individuals with Batten disease. Literature reviews, consensus statements created by a panel of international experts in clinical and laboratory diagnosis or treatment and management and endorsement from appropriate international professional societies such as the American Academy of Neurology, American Association of Neuroscience Nurses, etc. is required. These guidelines will serve as an educational resource for clinicians new to Batten disease. Therefore, it is expected that they will follow the Institute of Medicine’s Standards for Developing Trustworthy Clinical Practice Guidelines (http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx) and be widely disseminated in the most appropriate form and forum. The authors will be provided with $5,000 to create practice guidelines based upon the current state of science and clinical care and $10,000 if their plans include the creation of an international working group dedicated to developing additional guidelines across multiple levels of care — seizure management, occupational therapy, nutrition etc.

Applicants must send an email request for consideration of their topic area by August 1, 2013 to Dr. Frazier (mfrazier@bdsra.org) for approval before attaching a free-form grant application to administrative pages of the application form. Single issue and compendium practice guideline proposals will be due September 1, 2013.

$1M in Batten Disease Research Funding Awarded through BDSRA Research Funding Collaborative

Lisa — Fri, 15 Mar 2013 14:27:57 +0000

$1M in Batten Disease Research Funding Awarded

Jovan Joseph Allen

Lisa — Thu, 14 Mar 2013 19:47:51 +0000

Late Infantile – CLN2
Birth Date: 07/28/2008
Location: Denver, CO, U.S.

Rally For Rex

Lisa — Thu, 31 Jan 2013 16:09:42 +0000

www.rallyforrex.com

Rex Timko

Lisa — Thu, 31 Jan 2013 15:55:51 +0000

Late Infantile – CLN2
Birth Date: 11/24/2007
Location: Pittsburgh, PA, U.S.

William Braddock

Lisa — Mon, 28 Jan 2013 19:16:20 +0000

Late Infantile – CLN2
Birth Date: 05/22/2008
Location: Bryant, AR, U.S.

Mabel Larson

Lisa — Wed, 23 Jan 2013 20:00:10 +0000

Unknown NCL
Birth Date: 07/16/2010
Location: Clinton, IL, US

BDSRA Has Moved!

Lisa — Thu, 10 Jan 2013 17:34:20 +0000

The new BDSRA offices opened January 3, 2013. Our fresh new space provides many great opportunities to partner with local universities and research centers. Just five minutes from Downtown Columbus, we look forward to taking advantage of the many resources it has to offer. Some office construction is still underway, but we are fully operational. Our new address is 1175 Dublin Road, Columbus, OH 43215; our current toll-free number remains (800) 448-4570. Come visit us some time!

Mackenzie Gair

Lisa — Tue, 18 Dec 2012 21:26:47 +0000

Late Infantile — CLN2
Birth Date: 04/20/2008
Location: Winnipeg, Manitoba, Canada

Katelyn Faith Pauling

Lisa — Fri, 07 Dec 2012 20:52:12 +0000

Late Infantile – CLN2
Birth Date: 09/19/2006
Location: Montevideo, MN, U.S.

Elijah Clair Keller

Lisa — Tue, 20 Nov 2012 16:55:20 +0000

Late Infantile – CLN2
Birth Date: 03/19/2006
Location: Fresno, CA, U.S.

Mackenzie’s Hope

Lisa — Mon, 05 Nov 2012 17:36:53 +0000

www.mackenzieshope.com

Olivia’s Miracle

Lisa — Mon, 05 Nov 2012 17:32:35 +0000

www.oliviasmiracle.com

Bridget Kennicott

Lisa — Tue, 21 Aug 2012 17:06:44 +0000

Late Infantile – CLN2
Birth Date: 11/11/2004
Location: Carpentersville, IL, U.S.

Rosie Micha Walters

Lisa — Tue, 07 Aug 2012 20:50:09 +0000

Late Infantile — CLN2
Birth Date: 08/30/2005
Deceased Date: 08/20/2012
Location: Bridgend, Wales, U.K.

Melissa Froio Foundation

Lisa — Wed, 01 Aug 2012 14:50:47 +0000

Visit site

Steven J. Falkman

Lisa — Tue, 31 Jul 2012 20:44:03 +0000

Juvenile – CLN3
Birth Date: 09/11/1981
Deceased Date: 02/28/2006
Location: East Islip, NY, U.S.

James M. Falkman

Lisa — Tue, 31 Jul 2012 20:39:31 +0000

Juvenile – CLN3
Birth Date: 05/29/1978
Deceased Date: 05/29/1998
Location: East Islip, NY, U.S.

Brandon Robert Kellum

Lisa — Wed, 20 Jun 2012 20:54:31 +0000

Juvenile — CLN3
Birth Date: 11/14/1996
Location: Richlands, NC, U.S.

Laine Manning VanHoutan

Lisa — Fri, 15 Jun 2012 20:37:25 +0000

Late Infantile – CLN2
Birth Date: 01/11/2006
Location: Downers Grove, IL, U.S.

Noah Scott VanHoutan

Lisa — Fri, 15 Jun 2012 20:33:42 +0000

Late Infantile – CLN2
Birth Date: 04/21/2004
Location: Downers Grove, IL, U.S.

Adam Cianfrocco

Lisa — Fri, 15 Jun 2012 20:30:07 +0000

Late Infantile – CLN2
Birth Date: 03/26/1973
Deceased Date: 01/21/1984
Location: Allison Park, PA, U.S.

Texas Boy in News

Lisa — Tue, 17 Apr 2012 20:08:23 +0000

Casen Cameron’s Struggle Helps Fuel Fight Against Batten Disease
By TIM MONZINGO, Staff Writer
At 7:30 a.m. each day, 4-year-old Casen Cameron starts his regiment of medications. A series of three pills is intended to control the seizures that used to wrack his little body on a daily basis. A fourth pill helps control his salivation.
The pill regiment continues through the day until 8 p.m.
The measures are the latest and, thus far, most effective means to control the degenerative neurological disorder called Batten Disease.
“We’ve been through … how many medicines? You have to get the right cocktail,” said Pamela Cameron, Casen’s grandmother and a primary care giver. “I look like I have a pharmacy out there when I have everything set up.”
It is estimated that the disease affects “two to four of every 100,000 births in the United States,” according to the Batten Disease Support and Research Association. World-wide, it’s estimated some 1,200 children suffer from the disease, 20 of those cases in Texas.
What Casen’s grandmother and his father, Corey, along with all the other parents of Batten
Disease children, know is that the drugs only control the effects of the disease.
BATTEN DISEASE
“There’s a lot we don’t understand yet,” said Dr. Erika Augustine, a senior instructor of
neurology and pediatrics at the University of Rochester’s Batten Disease Center.
Current research suggests Batten Disease is the result of a mutated gene, inherited from a child’s mother and father who both are carriers. That gene produces a protein, and scientists are still trying to determine exactly how that protein acts in the body, Dr. Augustine said. “So how the disease works, that’s something that we’re still lacking in terms of knowledge,” she said, referring to what exactly causes the loss of sight, brain ability and muscle function. “We’re almost there, but there are things about the protein for this specific disease that are hard to study.” She said initial research focused on understanding something called a liposome, a center in the cell that regulates the waste the cell creates. Essentially, the gene mutation seems to keep the liposome from being able to clear away the waste, and it builds up, she said.
Over time, the damage causes blindness, dementia and a loss of muscle control, she said. As the disease progresses, a child’s body becomes less able to fight infections.
Early death is the inevitable end of Batten Disease. Casen suffered his first major seizure in November 2009, days before he turned 3. They continued into Christmas.
After a slew of doctors and specialists misdiagnosed Casen with epilepsy over the course of two years, confirmation of Batten Disease came from a child neurology specialist in Dallas in June of 2011. Since then, Casen has lost most of his sight, Corey and Pamela said. His doctor in Dallas told them he’s likely legally blind in his right eye with only a little vision in his left. Most of his muscle control, despite regular physical therapy, has gone as well.
In February, Corey snapped a picture of Casen, smiling and sitting on the floor at his
grandmother’s house. “He doesn’t sit up on his own anymore,” Corey said. “He’s just losing all his muscle tone.”
The disease has evidenced itself in his eyes even more in recent months, Corey said.
“They bounce continuously,” he said, playing a video on his phone of Casen’s eyes vibrating up and down like rubber ball caught in a continuous loop. “Now it’s every day, 24 hours a day. If his eyes are open, they’re bouncing.”
Dr. Augustine said that in the disease’s early stages, the child is aware of the changes. Until dementia sets in as the disease progresses, clouding the mind, the child knows something is wrong. “There is likely a period of time where they have some symptoms, and they’ve had some decrease in their overall function, yet they’re still cognitively aware enough to know that things are happening,” she said.
CRUSADING
Conceived from the devastation and helplessness Casen’s diagnosis brought on the Cameron family, Casen’s Crusade was born. The Crusade is the family’s way of fighting the disease, by spreading awareness and fighting for the research and medical work needed to spare other families the pain they’re suffering, Pamela and Corey said.
“They may not save Casen, but they can save another child,” Casen’s grandmother said.
The United States is at the epicenter of Batten Disease research, said Lance Johnston, the executive director of the Batten Disease Support and Research Association. The association is dedicated to providing support and money for families, scientists and doctors working to combat the disease.
Since its inception in the 1987, the association has poured more than $4 million into research on both the clinical and laboratory levels.
It isn’t easy, though, both Johnston and Dr. Augustine agreed.
While researchers at both the clinical and laboratory level face unique sets of challenges, Dr. Augustine said, there is one common thread. “Common to all of us is that it’s a rare disease. There are only so many people who have it,” she said. “There aren’t any affected individuals in western New York, in our area.”
To get research dollars from the federal government through the National Institute of Health and the Federal Drug Administration, Batten Disease researchers compete against researchers working with diabetes, cancer and other widespread illnesses, Johnston said.
“Rare disease has been lagging behind in research for years and years and years. It’s because numbers count,” he said. “You have a million people with cancer, and you have 500 children with Batten Disease. The numbers run the money.”
That realization is something that hits parents of Batten Disease children hard, Casen’s
grandmother said. She said they know other parents whose kids have leukemia and other diseases are suffering too, but she feels like they can take some comfort in the wide-ranging, well-funded research into those diseases.
“They’re testing, they do things for leukemia and cancer, diabetes and autism,” she said. “What are they doing for Batten?”
Johnston said part of his association’s mission is to try to get scientists to the place where they can effectively compete for big money from pharmaceutical, biotechnology companies and the government. Before they can get that money, scientists have to build data on what they’re looking into. That’s where the much of the association’s money goes.
Johnston calls it seed money. “The seed money we give them gives them that opportunity to develop the data that they need to go after the larger funding,” he said.
That money has spurred research in stem cell trails, gene enzyme replacement therapies, he said.
Scientists are even combing through thousands of unmarketed drugs by pharmaceutical
companies to see if any of them work for Batten Disease. The multi-drug approach Casen goes through daily isn’t unique to patients, Johnston said. Currently, some researchers are working to develop a “three-pronged” approach, combining gene therapy with bone-marrow transplants and drugs. “One of the things that’s really great about the research that we’re doing is we’re not putting all our eggs in one basket. We’re taking every approach that we can take,” Johnston said.
Despite efforts of scientists and doctors worldwide, Dr. Augustine said she thinks it will be some time before an effective way emerges to truly fight the disease.
For the time being, all the drugs and research has only truly proven effective at slowing the
diseases progression, not stopping or reversing the effects.
Casen’s father and grandmother said it was a tough decision, but they decided to take him out of drug trials to spare him more pain.
The decision was, in part based on a discussion with another East Texas family whose son, Joshua, was lost to the disease in 2007. “They said they spent too much time in the hospital, and if they had to do it over again, they wouldn’t do it,” Corey said about a conversation with Joshua’s parents, Paul and Leann Spencer. “I just want to love him, give him everything he needs.”
Casen’s grandmother said it might be different if there were evidence that a trial or therapy was effectively stopping or curing the disease.
That’s a sentiment Dr. Augustine said she understands completely. “I think that’s one of things that’s most challenging about this line of research,” she said. “Parents that are so willing and so giving often recognize that the research in which they’re participating,
the information that they’re sharing, may not help their child. Every day, every year is a year lost for a child who’s currently suffering from Batten Disease.”
Johnston said there are options for donating tissue for research postmortem to aid in research. That’s something Corey and Casen’s mother will have to discuss later.
In the meantime, researchers such as Dr. Augustine are hopeful that work on the disease is in a new stage, she said.
And through the struggle, Pamela said Casen has maintained one vital thing. “But you know, through all of it, he still smiles,” she said.
EDITOR’S NOTE: This is the latest in a series of occasional stories about Casen Cameron and his fight with Batten Disease.

Combination treatment in mice shows promise for fatal neurological disorder in kids

Lisa — Tue, 27 Mar 2012 18:25:47 +0000

By Caroline Arbanas (March 15, 2012)

Infants with Batten disease, a rare but fatal neurological disorder, appear healthy at birth. But within a few short years, the illness takes a heavy toll, leaving children blind, speechless and paralyzed. Most die by age 5.

There are no effective treatments for the disease, which can also strike older children. And several therapeutic approaches, evaluated in mouse models and in young children, have produced disappointing results.

But now, working in mice with the infantile form of Batten disease, scientists at Washington University School of Medicine in St. Louis and Kings College London have discovered dramatic improvements in life span and motor function by treating the animals with gene therapy and bone marrow transplants.

Click here for full article: https://news.wustl.edu/news/Pages/23561.aspx

Paula White

Lisa — Tue, 27 Mar 2012 02:22:22 +0000

Parry (Adult Onset)
Birth Date: 12/30/1956
Deceased Date: 04/21/2007
Location: Shelbina, MO, U.S.

Jim Frye

Lisa — Tue, 27 Mar 2012 02:18:58 +0000

Parry (Adult Onset)
Birth Date: 07/23/1958
Deceased Date: 12/06/2008
Location: Shelbina, MO, U.S.

Mason Smerdel

Lisa — Fri, 09 Mar 2012 17:52:41 +0000

Juvenile – CLN3
Birth Date: 04/12/2004
Location: Broadview Hts., OH, U.S.

Kate Benroth

Lisa — Fri, 09 Mar 2012 17:24:47 +0000

Late Infantile – CLN2
Birth Date: 09/09/2006
Location: Columbus Grove, OH, U.S.

Misty Dawn Cartwright

Lisa — Fri, 09 Mar 2012 17:02:20 +0000

Late Infantile – CLN2
Birth Date: 07/24/1986
Deceased Date: 06/30/1993
Location: Hatteras, NC, U.S.

Westley McKinley

Lisa — Thu, 08 Mar 2012 21:43:18 +0000

Late Infantile – CLN2
Birth Date: 08/03/2006
Location: Logan, OH, U.S.

Peter Edwards

Lisa — Sat, 03 Mar 2012 16:14:35 +0000

Finnish Late Infantile – CLN5
Date of Birth: 08/30/2003
Deceased Date: 02/23/2012
Location: New Market, MD, U.S.

Zoya Mirosavljevic

Lisa — Sun, 12 Feb 2012 01:31:01 +0000

Late Infantile — CLN2
Birth Date: 09/24/2004
Location: Novi Sad, Serbia

Zichaela Caffey

Lisa — Sun, 12 Feb 2012 01:29:55 +0000

Late Infantile — CLN2
Birth Date: 08/08/2005
Location: Arlington, TX, U.S.

Zane Lewis

Lisa — Sun, 12 Feb 2012 01:29:01 +0000

Infantile — CLN1
Birth Date: 12/19/2003
Deceased Date: 11/19/2005
Location: Fremont, IN, U.S.

Zachary Brandon Cramer

Lisa — Sun, 12 Feb 2012 01:27:41 +0000

Late Infantile — CLN2
Birth Date: 02/12/1995
Location: Jamestown, OH, U.S.

William Shaw

Lisa — Sun, 12 Feb 2012 01:26:27 +0000

Juvenile — CLN3
Birth Date: 01/18/1976
Deceased Date: 01/27/2006
Location: Everett, PA, U.S.

William Dean Phelan

Lisa — Sun, 12 Feb 2012 01:25:35 +0000

Late Infantile — CLN2
Birth Date: 02/20/2001
Deceased Date: 11/09/2011
Location: Las Vegas, NV, U.S.

Wian van Heerden

Lisa — Sun, 12 Feb 2012 01:24:34 +0000

Infantile — CLN1
Birth Date: 03/23/2006
Deceased Date: 01/24/2012
Location: Brakpan, South Africa

Westley Evans Powell

Lisa — Sun, 12 Feb 2012 01:21:17 +0000

Late Infantile — CLN2
Birth Date: 04/10/1980
Deceased Date: 03/03/1992
Location: Elkhart, IN, U.S.

Wes Franklin

Lisa — Sun, 12 Feb 2012 01:20:00 +0000

Juvenile — CLN3
Birth Date: 12/02/1981
Deceased Date:09/13/1991
Location: Tulsa, OK, U.S.

Wayne Lanham

Lisa — Sun, 12 Feb 2012 01:18:42 +0000

Juvenile — CLN3
Birth Date: 05/18/1967
Deceased Date: 03/9/1999
Location: Chelsea, OK, U.S.

Victoria Salladin

Lisa — Sun, 12 Feb 2012 01:17:36 +0000

Late Infantile — CLN2
Birth Date: 04/25/1970
Deceased Date: 09/10/1976
Location: Bradford, NY, U.S.

Victor Salladin II

Lisa — Sun, 12 Feb 2012 01:15:46 +0000

Late Infantile — CLN2
Birth Date: 04/16/1972
Deceased Date: 05/30/1984
Location: Bradford, NY, U.S.

Tyson Weaver

Lisa — Sun, 12 Feb 2012 01:14:24 +0000

Juvenile — CLN3
Birth Date: 11/18/1974
Deceased Date: 09/12/2004
Location: Fort Collins, CO, U.S.

Tyrell Witt

Lisa — Sun, 12 Feb 2012 01:13:10 +0000

Late Infantile — CLN2
Birth Date: 10/09/1997
Deceased Date: 05/04/2007
Location: Heber, UT, U.S.

Tyler Greene

Lisa — Sun, 12 Feb 2012 01:12:08 +0000

Late Infantile — CLN2
Birth Date: 08/25/1993
Deceased Date: 09/09/2001
Location: Washington, UT, U.S.

Tyler Allman

Lisa — Sun, 12 Feb 2012 01:09:34 +0000

Juvenile — CLN3
Birth Date: 04/09/2001
Location: Mishawaka, IN, U.S.

Tracy Walsdorf

Lisa — Sun, 12 Feb 2012 01:02:01 +0000

Juvenile — CLN3
Birth Date: 10/15/1971
Deceased Date: 01/16/1997
Location: Kenner, LA, U.S.

Thomas Christian Anderson

Lisa — Sun, 12 Feb 2012 01:00:38 +0000

Infantile — CLN1
Birth Date: 08/19/1998
Location: Garden City, IA, U,S,

Tevin A. Crissinger

Lisa — Sun, 12 Feb 2012 00:58:46 +0000

Infantile — CLN1
Birth Date: 08/29/2000
Deceased Date: 04/21/2004
Location: Spring, TX, U.S.

Terry Hart

Lisa — Sun, 12 Feb 2012 00:57:05 +0000

Juvenile — CLN3
Birth Date: 06/29/1973
Deceased Date: 02/03/2000
Location: Gilbertsville, PA, U.S.

Terell Amosah

Lisa — Sun, 12 Feb 2012 00:55:50 +0000

Late Infantile — CLN2
Birth Date: 07/14/2001
Deceased Date: 06/13/2009
Location: Oxbow, SK, Canada

Taylor Shaver

Lisa — Sun, 12 Feb 2012 00:52:49 +0000

Late Infantile — CLN2
Birth Date: 08/03/1993
Deceased Date: 01/02/1999
Location: Las Vegas, NV, U.S.

Taylor Porter

Lisa — Sun, 12 Feb 2012 00:50:30 +0000

Infantile — CLN1
Birth Date: 01/28/1993
Deceased Date: 09/27/2001
Location: Indianapolis, IN, U.S.

Taylor McClaine Hudson

Lisa — Sun, 12 Feb 2012 00:49:05 +0000

Late Infantile — CLN2
Birth Date: 03/19/1991
Deceased Date: 03/23/2005
Location: Eloy, AZ, U.S.

Taylor Lee Mohr

Lisa — Sun, 12 Feb 2012 00:44:23 +0000

Late Infantile — CLN2
Birth Date: 10/01/2003
Location: Ute, IA, U.S.

Taylor King

Lisa — Sun, 12 Feb 2012 00:42:56 +0000

Infantile — CLN1
Birth Date: 08/19/1998
Location: Charlotte, NC, U.S.

Taylor Joseph Clay

Lisa — Sun, 12 Feb 2012 00:41:46 +0000

Unknown NCL
Birth Date: 05/14/1993
Location: Melbourne, Australia

Tawnya Lynn Brown

Lisa — Sun, 12 Feb 2012 00:40:47 +0000

Juvenile — CLN3
Birth Date: 03/05/1975
Deceased Date: 12/04/1998
Location: Kalispell, MT, U.S.

Tatyanna Zazalak

Lisa — Sun, 12 Feb 2012 00:39:38 +0000

Late Infantile — CLN2
Birth Date: 02/28/2003
Location: Brandon, MB, Canada

Talon Fisher

Lisa — Sun, 12 Feb 2012 00:38:14 +0000

Late Infantile — CLN2
Birth Date: 10/27/1991
Deceased Date: 03/26/1997
Location: Bakersfield, CA, U.S.

Tabitha Marie Hendrickson

Lisa — Sun, 12 Feb 2012 00:37:11 +0000

Juvenile — CLN3
Birth Date: 07/20/1984
Deceased Date: 03/28/2000
Location: Houston, TX, U.S.

Szymon Strychanyn

Lisa — Sun, 12 Feb 2012 00:34:13 +0000

Late Infantile — CLN2
Birth Date: 09/27/2000
Deceased Date: 09/23/2008
Location: Bytom, Poland

Sue Reynolds

Lisa — Sun, 12 Feb 2012 00:32:44 +0000

Kufs (Adult Onset) — CLN4
Birth Date: April 18, 1975
Deceased Date: May 8, 2009
Location: North Hampton, MA, U.S.

Stuart Britz

Lisa — Sun, 12 Feb 2012 00:30:58 +0000

Late Infantile — CLN2
Birth Date: 07/10/1997
Deceased Date: 05/12/2005
Location: Kempton Park, South Africa

Stevie-jo Beere

Lisa — Sun, 12 Feb 2012 00:29:48 +0000

Infantile — CLN1
Birth Date: 12/20/1997
Deceased Date: 01/12/2006
Location: London, England

Steven Otto

Lisa — Sun, 12 Feb 2012 00:28:47 +0000

Late Infantile — CLN2
Birth Date: 12/17/1992
Deceased Date: 02/04/2003
Location: Frederick, MD, U.S.

Stephen Barnett Hatchett

Lisa — Sun, 12 Feb 2012 00:19:51 +0000

Juvenile — CLN3
Birth Date: 12/25/1985
Deceased Date: 08/23/2011
Location: Nashville, TN, U.S.

Stephanie Leis

Lisa — Sun, 12 Feb 2012 00:18:32 +0000

Juvenile — CLN3
Birth Date: 05/12/1980
Deceased Date: 11/08/2006
Location: Lakewood, NY, U.S.

Stefani Marie Puskar

Lisa — Sun, 12 Feb 2012 00:16:57 +0000

Infantile — CLN1
Birth Date: 05/14/1999
Deceased Date: 04/18/2009
Location: San Pedro, CA, U.S.

Srena Ann Passey

Lisa — Sat, 11 Feb 2012 23:49:08 +0000

Variant Late Infantile — CLN6
Birth Date: 02/02/1997
Location: Utah, U.S.

Spencer Grey Childress

Lisa — Sat, 11 Feb 2012 23:46:58 +0000

Late Infantile — CLN2
Birth Date: 05/05/1982
Deceased Date: 09/09/1992
Location: Carthage, NC, U.S.

Sonya Kuhr

Lisa — Sat, 11 Feb 2012 23:45:39 +0000

Late Infantile — CLN2
Birth Date: 1/11/1984
Deceased Date: 11/15/1994
Location: Mt. Isa, QLD, Australia

Shiv Rana

Lisa — Sat, 11 Feb 2012 23:44:16 +0000

Variant Late Infantile — CLN6
Birth Date: 7/22/2000
Deceased Date: 06/04/2010
Location: Vienna, VA, U.S.

Sheree Kuhr

Lisa — Sat, 11 Feb 2012 23:41:59 +0000

Late Infantile — CLN2
Birth Date: 01/11/1984
Deceased Date: 06/23/1992
Location: Mt. Isa, QLD, Australia

Shelley Smith

Lisa — Sat, 11 Feb 2012 23:39:20 +0000

Juvenile — CLN3
Birth Date: 03/13/1984
Deceased Date: 01/27/2005
Location: Ooltewah, TN, U.S.

Shaun Smyser

Lisa — Sat, 11 Feb 2012 23:37:04 +0000

Late Infantile — CLN2
Birth Date: 03/06/1992
Deceased Date: 12/11/1998
Location: Stockton, IA, U.S.

Shannon Avrett

Lisa — Sat, 11 Feb 2012 23:35:40 +0000

Infantile — CLN1
Birth Date: 06/06/1994
Deceased Date: 05/24/ 2006
Location: Waialua, HI, U.S.

Shanade Jooste

Lisa — Sat, 11 Feb 2012 23:34:16 +0000

Late Infantile — CLN2
Birth Date: 11/14/1995
Deceased Date: 4/26/2003
Location: Pretoria, South Africa

Seth Holder

Lisa — Sat, 11 Feb 2012 23:31:59 +0000

Late Infantile — CLN2
Birth Date: 10/10/2002
Deceased Date: 09/01/2009
Location: Mandurah, WA, Australia

Seth Cobb

Lisa — Sat, 11 Feb 2012 23:30:58 +0000

Juvenile — CLN3
Birth Date: 06/15/1995
Location: China Grove, NC, U.S.

Sergio Sorin Belu

Lisa — Sat, 11 Feb 2012 23:29:17 +0000

Juvenile — CLN3
Birth Date: 08/091999
Location: Sterling Heights, MI, U.S.

Savannah Rose Fraser

Lisa — Sat, 11 Feb 2012 23:28:02 +0000

Infantile — CLN1
Birth Date: 11/15/2001
Deceased Date: 03/17/2009
Location: Dundee, Scotland

Savannah Meras

Lisa — Sat, 11 Feb 2012 23:25:39 +0000

Late Infantile — CLN2
Birth Date: 08/16/1991
Deceased Date: 09/18/1998
Location: Upland, CA, U.S.

Saul Fraser

Lisa — Sat, 11 Feb 2012 23:24:06 +0000

Infantile — CLN1
Birth Date: 11/15/2001
Deceased Date: 03/17/2009
Location: Dundee, Scotland

Sarah Royalty

Lisa — Sat, 11 Feb 2012 23:21:57 +0000

Juvenile — CLN3
Birth Date: 10/05/1985
Deceased Date: 12/19/2009
Location: Ursa, IL, U.S.

Sarah Osmoe

Lisa — Sat, 11 Feb 2012 23:19:35 +0000

Juvenile — CLN3
Birth Date: 11/20/1977
Deceased Date: 11/16/2006
Location: Hettick, IL, U.S.

Sarah Inks

Lisa — Sat, 11 Feb 2012 23:17:57 +0000

Juvenile — CLN3
Birth Date: 07/07/1994
Location: Bellevue, NE, U.S.

Sara Gedeon

Lisa — Sat, 11 Feb 2012 23:15:36 +0000

Late Infantile — CLN2
Birth Date: 04/14/1997
Deceased Date: 04/11/2006
Location: Bozeman, MT, U.S.