Where did the money from the Ice Bucket Challenge go?

Photo: Facebook / Ice Bucket Challenge

Pete Freits, former professional baseball player at Boston College and author ALS Ice Bucket Challengewas hospitalized. This news spread through social networks, where people wrote laudatory tweets, thanks to his efforts to find drugs to treat amyotrophic lateral sclerosis, also known as Lou Gehrig's disease (ALS).

In 2012, at the age of 27, Freits was diagnosed with ALS. In 2014, he could no longer walk, eat and talk. 31 July Freits posted on the social network rules of the marathon, the first participants of which were his teammates. Similar campaigns, with the collection of money in other funds, were held earlier.

Summer 2014 year promotion Ice Bucket Challenge became a mass and gained popularity, especially in the United States. Many celebrities, actors, politicians, athletes, businessmen, musicians and ordinary people took part in the campaign.
These efforts attracted $ 115 million to the ALS Association, as well as millions to other ALS charity projects.

Where did all this money go? Here is a partial list:

Search for a new genetic clue

The ALS Association contributed two-thirds of the fundraising—$77 million—to research that led to the discovery of a variant in the NEK1 gene, linked to 3% of ALS cases. This could provide the potential for developing a new drug. The association is now funding research in mice to better understand the role this defective gene plays in the progression of ALS.

To try to make more of these discoveries, the association invests in tracking other genetic variants associated with the disease. Researchers at Columbia University received 3,5 a million dollars to carry out the genetic sequence of 1500 people with ALS. Another project received a grant of 2,5 million dollars to streamline the tissues of deceased patients with ALS.

Community Support Investments

ALS has allocated 23 a million dollars or one-fifth of the money to support patients and their communities. In Tennessee, iPads are provided for the sick to help them communicate when it becomes difficult to talk. In Rhode Island, modest grants have been allocated to help patients pay for disabled ramps and stair lifts. And in western Pennsylvania, money went to free training for caregivers and counseling for people who lost a loved one with ALS.

Biomarker Search

Part of the money went to search for biomarkers for ALS, which could monitor and track the progression of the disease. Scientists in St. Louis got 1 a million dollars to try to figure out how to track a protein known as TDP-43, which is almost always found in ALS cases. A Boston researcher received 1 a million dollars to upgrade the storage of blood and cerebrospinal fluids experienced in the search for biomarkers.

In Cedar-Sinai, Los Angeles, a researcher received a grant of 1,9 million dollars to try to identify inflammatory biomarkers by collecting blood and skin samples from people with and without ALS. The same researcher got another 400 000 dollars to work with General Electricto try to develop a nanoparticle for magnetic resonance imaging.

Test new compounds

There are many compounds that have struck scientists with what they can do in a petri dish or when examining mice. However, they cannot proceed to human trials without additional funding. Money from Ice Bucket Challenge help with this.

A researcher at the University of Massachusetts has received 2,5 a million dollars for a project that aims to deliver DNA molecules to the brain and spinal cord using transport viruses to silence genes that sometimes cause toxicity involved in ALS.
Exciting success Ice Bucket Challenge made him an example for other charitable organizations.

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