Project ALS

Project ALS

Founded	1998
Founder	Jenifer Estess Valerie Estess Meredith Estess Julianne Hoffeberg
Type	Non-profit
Purpose	to identify and support a treatment and cure for ALS
Location	New York, NY
Key people	Meredith Estess, President Robert S. Kaplan, Chairman
Website	projectals.org

Project ALS is a non-profit organization whose mission is to identify and support leading scientific research toward the first effective treatments and a cure for ALS. Founded in 1998 by Jenifer Estess, Valerie Estess, Meredith Estess, and Julianne Hoffenberg, Project ALS recruits scientists and doctors to work together — rationally and aggressively — toward a better understanding of ALS and other closely related neuro-degenerative diseases.

History

Project ALS was founded in 1998 as a non-profit organization when Jenifer Estess, a 35-year-old New York theater and film producer, was diagnosed with ALS. Historically, scientists working separately on various aspects of the disease conducted ALS research. Project ALS changed that approach by requiring that researchers and doctors work together, share data openly, and meet research milestones.

Project ALS’s Research Advisory Board (RAB) brings together accomplished scientists to seek out the most promising research and set the agenda for the entire research field.

Research

ALS in a Dish

In 2008, scientists from the Jenifer Estess Stem Cell Lab, Harvard, and Columbia achieved the Time “Scientific Breakthrough of the Year” by reprogramming motor neurons from a small sample of skin from an ALS patient — a method known as iPS, or induced pluripotent stem cell technology.

Improving Cell Metabolism

A cell’s inability to metabolize proteins is a hallmark of ALS, Alzheimer’s, Parkinson’s and Huntington’s diseases. The Project ALS team led by researchers at Harvard and the University of Massachusetts are studying pathways responsible for poor protein management in ALS.

Ocular Motor Neuron Resistance study

ALS affects nearly all voluntary muscles in the body except for the muscles controlling eye movement. Project ALS is driving a six-laboratory study of ocular motor neuron resistance. The goal is to confer resistance upon more vulnerable motor neurons in ALS.

Lipids

Project ALS researchers at Columbia University have identified distinctive lipid signatures that may lead to early diagnosis and information about disease progression.

Celebrity involvement

The following people and groups have been involved with Project ALS:

• Julianna Margulies
• Anne Meara
• Caroline Rhea
• Debora Spar
• Thomas Jessel
• Northport High School
• Donna Hanover
• Edie Falco
• Ben Stiller

Initiatives

Women & the Brain, The Don't Talk-a-thon

External links

• Project ALS