Running for Hope ~ Honor of Ethan Gahlbeck October 15, 2011

Hi Everyone!

As many of you know, I have decided to run the 2011 Detroit Marathon this October in honor of Ethan Gahlbeck, who was diagnosed with Late-Infantile Batten disease in 2010.

You may not have ever heard of Batten disease (as I myself had not until Ethan was diagnosed). I am running not only to raise money for Batten disease research but also to help raise awareness for this devastating condition. I am writing to you today to ask for your support in this effort.

WHAT IS BATTEN DISEASE?
Also known as Spielmeyer-Vogt-Sjogren-Batten disease, it is the most common form of a group of genetic disorders called Neuronal Ceroid Lipofuscinosis (or NCLs). The main forms of NCL are classified by age of onset and have the same basic cause, progression and outcome. However, the forms of NCL are all genetically different.

Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease/NCL become blind, bedridden, and unable to communicate. Presently, it is always fatal.

Batten disease/NCL is relatively rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States. Fewer than 450 children in the United States have Batten disease, and as a result it receives very little research attention. The Centers for Disease Control contributed less than $5 million to Batten research in 2008, and only a handful of scientists around the world are focused on potential therapies. $5 million is divided by the 10 types of Batten disease currently known, so LINCL only receives a small segment of the $5 million.

Batten Disease is not contagious or, at this time, preventable.

WHO IS ETHAN?
Six year old Ethan (photo attached) was diagnosed with Late Infantile Batten disease/LINCL in the summer of 2010. The Gahlbeck family has been very dear to the Nidetz family since long before I married my husband, David, and the diagnosis was heartbreaking for us all. The diagnosis was not easily made and it took several years, multiple doctors and specialists to finally make the official diagnosis. Ethan's Batten disease story began on September 23, 2008, when Ethan had his first seizure. Over the course of the next year and a half he continued to have seizures and also began to show other signs of decline, his vision became impaired and he began to fall more frequently. By June of 2010, Ethan fully lost his ability to independently walk or to race his trucks up and down the hallway. By July, he was hardly talking. On July 30th, 2010, the Gahlbecks received the Late-Infantile Batten disease diagnosis. Their focus now is on making memories and comfort for Ethan. They are trying to embrace everything in life that we all take for granted - as each of us should do every day.

We can all help support the Gahlbecks and other families enduring a Batten disease diagnosis by raising awareness and helping to support the research that searches for therapies and a cure for this disease.

HOW CAN YOU HELP?

If you can make a monetary donation:

Online:
-Please visit www.NoahsHope.com and click on "Donate"

-You will be directed to the DuPage Community Foundation website where you will be able to make a donation of $25 or more.

***Please enter "Ethan Gahlbeck" in the "In Honor Of" section of this form. This is how I will be tracking donations. (There is no need to complete the "Notify Third Party" section with my information)

By Mail:
Checks for any donation amount can be sent to

DuPage Community Foundation
c/o Noah’s Hope Fund
104 E. Roosevelt Road, Suite 204
Wheaton, IL 60187-5267

Please make check's payable to The DuPage Community Foundation
Memo: Noah's Hope - Ethan Gahlbeck

Noah's Hope supports Late Infantile/Batten disease research.

Not able to make a donation?

Spread the word! Please visit www.NoahsHope.com to learn more about another Chicago family close to the Gahlbecks and their journey in having two children diagnosed with Batten disease. They have begun an active campaign to raise money and to raise awareness. The website contains ample information about the disease as well as fundraising opportunities, upcoming events, and volunteer opportunities.


Thank you so much for your support,
Jennifer Nidetz
jennkgreene@gmail.com