Noah’s Hope

Posted on May 14, 2012

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Noah's Hope raises funds for Late Infantile Batten Disease

Life with Batten disease is a daily struggle for 8-year-old Noah and 6-year-old Laine. It’s also a heartbreaking battle for the people who love them, especially their parents, Jennifer and Tracy VanHoutan.

Batten disease — or Late Infantile Neuronal Ceroid Lipofuscinosis — is a rare and genetic illness marked by seizures, loss of muscle coordination and progressive mental deterioration. Sadly, there is no cure. Children with the disease usually die between the ages of 8 and 12.

Fewer than 500 children in the U.S. have Batten disease. With such a small patient population, research is challenging. There aren’t as many medical experts or researchers focused on the disease.

And funding is scarce.  While cancer research attracts more than $7 billion in the U.S. each year, a rare disease such as Batten raises about 0.001% of that amount*.

Ironically, rare diseases affect millions of people. According to the National Organization for Rare Disorders, about 1 in 10 Americans have been diagnosed with rare or “orphan” diseases.

Every childhood disease deserves a cure.

The VanHoutans work tirelessly towards a cure for Batten disease. Since Noah’s diagnosis, they have raised more than $250,000 and collaborated to fund six research studies around the world. Recently working with Partnership for Cures, Noah’s Hope received a Tellabs Foundation grant for research.

If you’re interested in helping the VanHoutan family fight Batten disease, check out the Noah’s Hope website or join them for the Run for Hope 5K on Sunday, May 20.

(Read more in a recent Press Release.)

* I don’t have exact figures, but this is an extremely conservative estimate. The National Cancer Institute, the largest federal funder, awards about $5 billion each year. NGOs also raise billions. Charities focused on breast cancer, for example, raise about $1.7 billion a year, according to Charity Navigator. It doesn’t count corporate research funds or the full amount of federal or private funding. Tracy VanHoutan estimates that Late Infantile Batten disease raises between $750,000 to $1 million each year, including NIH and private funding.

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