BDSRA - Dallas

2012 Hope For Batten Cure

Admin — Wed, 01 Feb 2012 11:00:19 +0000

2012 Hope for Batten Cure
5K Run / 2 Mile Walk
1K Fun Run

In Honor of McKenna and Eric Lowden

Image Courtesy of Zizi and Zed Caffey

Saturday, May 19th, 2012
Bachman Lake
3500 West NW Hwy.
Dallas, Texas 75220

SPONSORED BY
BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION (BDSRA)

Registration and Packet Pickup Sites

Admin — Wed, 01 Feb 2012 10:00:23 +0000

Registration Fees
5K Run: Pre-registration: $25.00 ($30.00 on Race Day)
2 Mile Walk: Pre-registration: $20.00 ($25.00 on Race Day)
1K Fun Run: $10.00

Online Registraton
(Note: the link below will take you to the Get-Me-Registered website.)https://secure.getmeregistered.com/HopeForBattenCure

Registration and Packet Pickup Sites
Wednesday & Thursday, May 16 & 17, 10:00 a.m. to 7:00 p.m.
Run-On
5400E. Mockingbird Lane, #114
Dallas, Tx, 75206
Google Map: Here

Register by Mail
You can register by mail, using this: Registration Form
Mail the completed form, and payment (before May 15) to:
Nancy Lowden,
2116 Cross Creek Drive,
Dallas, Tx 75243-4602

The 5K Race will circle Bachman Lake, following the trail. This mostly flat course should allow runners to record a fast time.

For more information on this event, contact:
Nancy Lowden at 972-497-9705 or at nslowden@swbell.net

With Your Help, There Is Hope!

Run / Walk Information

Admin — Wed, 01 Feb 2012 09:58:24 +0000

Saturday, May 19, 2012
Bachman Lake Trail,
3500 West NW Hwy.
Dallas, Texas 75220
(NW Hwy. and Lemmon Avenue)
View Google map: Here

Race Day Registration – 8:00 a.m.
5 K Run – 9:00 a.m.
2 Mile Walk – 9:05 a.m.
1K Fun Run – 10:00 a.m.

USATF – CERTIFIED COURSE

1^st Overall Male and Female
1^st Overall Masters, Male and Female
1^st, 2^nd, and 3^rd in age Category
Customized trophies by www.khsculpture.com

2010 Race Photos

BDSRA — Tue, 01 Mar 2011 03:30:35 +0000

Team Goldilocks with Goat Trophy

Nancy Lowden, Pat Metcalf, and Chris Stratton

Grandad, Chris, and Eric

Grandad and Eric

Eric with Trophy

Chris Barton with Charlie and Olivia

Special Thanks

BDSRA — Fri, 25 Feb 2011 06:17:45 +0000

Special Thanks to:

Braumiller Schulz & Co. LLP

for printing of race flyers.

Chris Barton for his

2009 New York Marathon

Fundraiser.

Bill Borowski and Baylor

Sports Care for providing

two bicycle EMT’s.

David Hartwig of

DH Sports for

race management.

Chris Stratton and

the Dallas Running Club’s

Team Competition’s

$1,125 donation in the name

of the winning team

Team Goldilocks.

2010 Run For Hope Sponsors

BDSRA — Fri, 25 Feb 2011 06:01:32 +0000

THANK YOU to our 2010 Sponsors

Gold Sponsorship ($1,500)

Scott and Carol Lowden

SAP (matching program)

Silver Sponsorship ($500)

A-1 Servomotor Repair

Ron and Kathy Saunders

Nancy and Scott Lowden

Bronze Sponsorship ($250)

Melva and Don Bush

Linda and Doug Dixon

Alison and Rick Kraft

Carolina and Mack Lancaster

Sarah and Don Templin

Contact: Nancy Lowden at 972-497-9705 or at nslowden@swbell.net to learn more about sponsorship opportunities for this event.

With Your Help, There Is Hope!

What is Batten Disease?

Admin — Thu, 24 Feb 2011 18:10:53 +0000

Batten Disease is a rare degenerative brain disease that affects children. Children are born normal, and reach most developmental goals. BUT… when the disorder manifests itself, the children soon become blind, suffer many different types of seizures which often become extremely hard to control. They will begin to suffer cognitive decline, begining with the loss of short term memory. Many will suffer drastic personality changes, sometimes bordering on psychotic behavior. Mobility is affected begining with stumbling and ending with the child being in a wheelchair.

One of the most difficult stages of the disease occurs when the child loses his/her speech. When that’s gone, it becomes a guessing game as to the child’s needs, pain, etc. This is followed by the loss of the abilities to eat and drink. Children will soon be fed through a tube inserted through the abdominal wall.

The disease causes death of brain cells. Death for the child happens when the brain can no longer sustain life.

Batten Disease was first identified 180 years ago. However, it has only been in the past ten years that progress has been made. Today there is a treatment trial underway, and we are hoping for two more trials to start next year.

With Your Help There is Hope!

Admin — Thu, 24 Feb 2011 12:00:49 +0000

For more information about Batten Disease
contact the national organization at:

BDSRA
166 Humphries Dr.
Reynoldsburg, OH 43068
Phone: 1-800-448-4570
Web site: www.bdsra.org

“A Light in a World of Darkness”

I wish to thank Joni Metcalf, President of the Minnesota Chapter of BDSRA for her invaluable assistance.

We also thank Carol Lowden for designing the picture used on this website and Hope Lowden for coloring the picture.

Message from Scott Lowden

Admin — Thu, 24 Feb 2011 12:00:14 +0000

Batten Disease
Batten Disease is a relatively rare genetic neurodegenerative disease that tends to strike boys and girls of Northern European ancestry. It is always fatal. Juvenile Batten shows few, if any, symptoms in the first five years; so the child begins life normally. Visual impairment, an early manifestation, begins at age six or seven. A trip to the eye doctor, not uncommon for children that age, often initiates the process that will result in an unexpected and truly horrifying diagnosis.
Clinically, juvenile batten disease is characterized by the mutation of a gene called CLN3. The mutation reduces or prevents the production of enzymes that are necessary for normal neurotransmission. In real life, the defect results in a progressive chemical chain reaction that produces blindness, epileptic seizures and the loss of cognitive and motor skills. These symptoms occur episodically at first, then with increasing frequency. Eventually the child will lose the ability to walk, to communicate and, finally, to carry on any life functions. The process can take 20 years.
Our Story
When Chris and Danielle brought their six year old son Eric to the eye doctor in 2003, they could never have expected the nightmare that would follow. Several diagnostic failures eventually led to a test and confirmation in September, 2004, that Eric had Batten Disease. There was no known incident in Chris’s or Danielle’s family histories that would forewarn them that they each carried a rare recessive gene. And in Nature’s lottery, even though they carried the gene, Eric still had only a one-in-four chance of inheriting the disease.
Eric’s sister McKenna was born before Eric’s diagnosis. Despite the three-to-one odds in her favor, she too was diagnosed with Batten in October 2007.
Eric and McKenna are our grandchildren. Chris is our son. Both Chris and Danielle are college graduates. Chris has a PhD in medicinal chemistry and works for a pharmaceutical research company. They have two younger daughters, Sophie (5) and Tori (1) who do not have Batten Disease. They will provide the best care possible for their children, but their family can never be normal.
Hope for Batten Cure
Because it is rare in America, Batten Disease does not attract large government grants or charitable funding. Our focus is on a cure, even if it may come too late for our own family.
Nancy is active in the running community and for the third year has organized a 5K Run, 2 Mile Walk and 1K Fun Run scheduled for May 14, 2011. The race will be held at Bachman Lake, 3500 West NW Hwy., Dallas, 75220. All net proceeds of the event will be contributed to BDSRA and designated for research.
If you do not attend the event but wish to contribute, you may write a check to BDRSA and send it to Nancy Lowden, 12116 Cross Creek Dr., Dallas, TX 75243. BDRSA is a non-profit organization qualified under 501 (c) (3) of the Tax Code. It supports over 1,200 families worldwide who have children with Batten Disease.
Don’t hesitate to call Nancy at 972-407-9705 with any questions. Many thanks for your consideration.
Scott Lowden

A Personal Note To You…

Admin — Thu, 24 Feb 2011 12:00:08 +0000

A personal note to you…

First, I thank you for the opportunity to educate you about Batten Disease–a very rare inherited, degenerative, neurological disease which affects persons of any age, but primarily infants, toddlers and school age children. It begins unexpectedly and leads to a progressive loss of brain function eventually leading to an early death. At this time, there is no treatment or cure available and it is always fatal.

In the United States, one child is diagnosed with the disease every week! Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden, and unable to communicate. Presently, there is no treatment for Batten Disease and the disease is always fatal. Because of its rarity, Batten Disease does not attract large government grants or charitable funding. For more information go to the BDSRA website: www.bdsra.org

Our only grandson, Eric (15) was diagnosed with juvenile Batten Disease in the fall of 2004. In the fall of 2007 our granddaughter, McKenna (9), was also diagnosed with juvenile Batten Disease. Eric is now almost completely blind, but plays baseball and hockey on special leagues, and enjoys swimming and building leggos. McKenna also participates in the special hockey league. She enjoys watching “Underdog” cartoons and playing Barbie dolls with her sister, Sophie (5). Both Eric and McKenna are entertained by Zorro (the family dog) and Kamarhi (the family cat). The newest addition to the family is Tori (1). Sophie and Tori have been genetically tested and they do not have Batten Disease. Let us hope their parents, Chris and Danielle, will be able to handle, mentally and physically, the many difficult challenges they will face in the coming years.

We need your help. Please consider participating in my third annual Hope for Batten Cure 5K Run, 2 Mile Walk, 1K Fun on Saturday, May 15, 2010 at Bachman Lake in Dallas. If you cannot attend the event but wish to contribute, you may write a check to BDRSA and send it to Nancy Lowden, 12116 Cross Creek Dr., Dallas, TX 75243. All monies raised will be designated for research into finding a cure/treatment for this horrible disease. BDRSA is a non-profit organization qualified under 501 (c) (3) of the Tax Code.

It is my hope and prayer that you will participate or donate to my annual fundraising event.

Yours truly,

Nancy and Scott Lowden
Eric and McKenna’s Grandparents

SPONSORED BY
BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION (BDSRA)