WHAT IS ALS?
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and in the UK as Motor Neuron Disease, is a uniformly fatal brain disease.
ALS targets nerve cells called motor neurons which send messages from the central nervous system to muscles throughout the body. In ALS, as motor neurons die, a person progressively loses the ability to walk, speak, swallow, and breathe. Their cognitive function and senses remain intact. ALS does not discriminate. It affects people of all ages, from teens to seniors, and is usually fatal within 2-5 years of diagnosis. In the late stages of the disease, patients need help with everything, from the little to the big. ALS can be inherited or sporadic.
Every 90 minutes someone is diagnosed with ALS, but because it kills so quickly the total number who live with ALS are relatively small. Currently, there is no effective treatment or cure for this disease.
PROJECT ALS
Project ALS was founded in 1998 by Jenifer Estess, her family and friends after her diagnosis with the disease. At that time clinicians and scientists were working separately on varying aspects of the disease. There was no structured effort underway to solve ALS. Project ALS developed a strategic business model that focuses exclusively on research – it identifies and funds the most promising scientific research that will lead to the first effective treatments and ultimately a cure for ALS.
They recruit the world’s best scientists and doctors to work together—rationally and aggressively—to develop a better understanding of the ALS disease process and, in parallel, better therapeutic strategies. Project ALS has funded research programs at leading academic institutions including Harvard University, Columbia University, UCSF, and the Salk Institute.
For more information see https://projectals.org/
2024 COEUR BLANC & PROJECT ALS
We have decided to support two areas within the ALS sphere with the money raised from this year’s challenge.
Firstly, Project ALS has identified two targeted small molecule compounds that appear in disease models to protect motor neurons and cross the blood-brain-barrier. Funds raised through the Coeur Blanc would be directed toward the analysis of these compounds to understand their brain penetrance, oral bioavailability, and target engagement.
Secondly, in line with Project ALS’ commitment to people living with ALS, we will also be supporting Her ALS Story. Founded by Leah Stavenhagen, Her ALS Story is a group of over 80 women diagnosed with ALS before the age of 35. At a time in their lives when most women are establishing careers, finding partners and growing families, the women of Her ALS Story were each dealt a terminal diagnosis with no available treatments to stop or reverse the disease. Her ALS Story use their experiences to raise ALS awareness, support research and legislative initiatives, and advocate to deliver better therapies to ALS patients faster.
For more information see https://heralsstory.org/
