Batten Disease Support and Research International Awareness Days
Batten Disease Support and Research Association is holding its annual Batten Disease Awareness Days on June 6 & 7, 2009.
Reynoldsburg, OH, May 23, 2009 --(PR.com)-- Each year the Batten Disease Support and Research Association does its part to help bring recognition to a rare but devastating disease. Batten Disease is a genetic neurological disease that brings an early death to each child it affects. The disease may not be well known, but its effects on a family can be seen in numerous cities and towns around the country. This is why the Batten Disease Support and Research Association is holding its annual Batten Disease Awareness Days on June 6 & 7, 2009.
Approximately one child is diagnosed with Batten Disease each week. While there is hope in research for a treatment or cure, the funds are hard to come by. Families around the world will be doing their part to raise both awareness and funds in the form of fundraisers. There are over twenty families throughout Michigan that have been touched by Batten Disease, at least five in the Grand Rapids area.
Jacob Geer of Grand Rapids has been diagnosed with Batten Disease. His family is currently testing to see which form of this disease Jacob has. It is believed he has the late infantile form. No matter what form he has, the outcome of this disease is always fatal. "For now, Jacob is our same little boy. We are spending what time we can with him and trying to build on the memories. He can still see (he will become blind), walk and talk. For how long, we do not know. His life is so precious and we are truly thankful for each day God blesses us with him. We appreciate your thoughts, prayers and contributions to the BDSRA to help find a cure for this devastating disease” say his parents Chris and Rob Geer.
You can help spread awareness about the cruelty of this disease. On June 6 & 7, please take a moment to tell someone about Batten Disease and how it can steal a precious child’s hopes and dreams. You can also donate to the Batten Disease Support and Research Association by visiting their website at www.bdsra.org or through Jacob Geer’s website at www.jacobsprayer.org. Every story and every cent make a difference.
A Deadly Disease with No Cure
Batten disease is a genetic neurological disorder that affects children and adolescents. 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. It does not discriminate against age, race, or socioeconomic status. Presently, there is no effective treatment Disease and the disease is always fatal.
About The Batten Disease Support and Research Association
The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. Over 60% of our annual budget goes toward research. We have been supporting families since 1987, and our organization continues to gain strength. We encourage you to visit our website at www.bdsra.org to learn more about the cruelty that is Batten Disease and what you can do to help. You can be the “light in a world of darkness” for a child diagnosed with Batten Disease.
Contact:
Rob Geer
Batten Disease Support and Research Association
166 Humphries Drive
Reynoldsburg, Ohio 43068
616-855-6315
geer@umich.edu
http://www.bdsra.org
###
Approximately one child is diagnosed with Batten Disease each week. While there is hope in research for a treatment or cure, the funds are hard to come by. Families around the world will be doing their part to raise both awareness and funds in the form of fundraisers. There are over twenty families throughout Michigan that have been touched by Batten Disease, at least five in the Grand Rapids area.
Jacob Geer of Grand Rapids has been diagnosed with Batten Disease. His family is currently testing to see which form of this disease Jacob has. It is believed he has the late infantile form. No matter what form he has, the outcome of this disease is always fatal. "For now, Jacob is our same little boy. We are spending what time we can with him and trying to build on the memories. He can still see (he will become blind), walk and talk. For how long, we do not know. His life is so precious and we are truly thankful for each day God blesses us with him. We appreciate your thoughts, prayers and contributions to the BDSRA to help find a cure for this devastating disease” say his parents Chris and Rob Geer.
You can help spread awareness about the cruelty of this disease. On June 6 & 7, please take a moment to tell someone about Batten Disease and how it can steal a precious child’s hopes and dreams. You can also donate to the Batten Disease Support and Research Association by visiting their website at www.bdsra.org or through Jacob Geer’s website at www.jacobsprayer.org. Every story and every cent make a difference.
A Deadly Disease with No Cure
Batten disease is a genetic neurological disorder that affects children and adolescents. 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. It does not discriminate against age, race, or socioeconomic status. Presently, there is no effective treatment Disease and the disease is always fatal.
About The Batten Disease Support and Research Association
The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. Over 60% of our annual budget goes toward research. We have been supporting families since 1987, and our organization continues to gain strength. We encourage you to visit our website at www.bdsra.org to learn more about the cruelty that is Batten Disease and what you can do to help. You can be the “light in a world of darkness” for a child diagnosed with Batten Disease.
Contact:
Rob Geer
Batten Disease Support and Research Association
166 Humphries Drive
Reynoldsburg, Ohio 43068
616-855-6315
geer@umich.edu
http://www.bdsra.org
###
Contact
Batten Disease Support and Research Association
Rob Geer
616-855-6315
www.bdsra.org
Rob Geer
616-855-6315
www.bdsra.org
Contact
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