Run for Ethan Gahlbeck & Noah's Hope October 21, 2012

Dear Friends,

I need your help with a very special request. On Sunday, October 21, I will be running in the Detroit Marathon in an effort to raise money for Noah’s Hope and the fight against Batten disease. With Batten disease occurring in 2 to 4 of every 100,000 births in the United States, it receives very little research attention.

Noah’s Hope, a foundation raising critical funding for Batten Research, as well as informing the community about Batten disease, was established in 2009 to change that.

Batten disease is an inherited neurological disease that currently has no cure. In 2010, a very dear friend, Ethan Gahlbeck, was diagnosed with the Late Infantile form at the age of 5. We met Ethan in 2006 when he and Clare were in day care together. Ethan was developing normally up until the age of 3, and then suddenly he began to have seizures. After nearly 2 years of multiple doctor visits, testing, and medications, the horrific diagnosis was given to Ethan’s parents…Late Infantile Batten disease. Early symptoms of the Late Infantile form, occurring between the ages of 2 to 4, are seizures and loss of muscle coordination.

Over time, affected children suffer mental impairment and progressive loss of sight and motor skills. Eventually, children with this form of Batten disease become blind, bedridden, and unable to communicate. Typically, children with Late Infantile Batten disease succumb to the disease between the ages of 8 and 12 years old.

Brave Ethan (who will be 8 years old on Christmas), his parents Julie and Alan, and his little brother, Nolan, are such an inspiration of strength and courage as they battle Batten disease. Please help me help them by supporting me in reaching my personal goal of raising $1,200. All proceeds will go to Noah’s Hope and will help Ethan and other children fight Batten disease, because “Every childhood disease deserves a cure”.

Thank you for your consideration!

Sincerely,

Rachel Mortenson

(630) 400-3325



Donations can be made following these simple steps:

Go to the Partnership for Cures Website:
http://www.4cures.org/home/donation_form

Click on the red “Donate” button

Make donation and in “Donation designated for” box at bottom, please enter “Noah’s Hope – Ethan Gahlbeck” so that donations can be tracked

All donations are tax deductible