Upcoming Events and News
This fall, the nation’s top-ranked high school tight end is teaming up with Project A.L.S. to Catch the Cure.* Adam Breneman, who has already committed to play football at Penn State in 2013, will devote his senior year at Cedar Cliff High School to raising funds and awareness for Project A.L.S. Adam, 17, is raising money in honor of family friend Tom Kirchhoff, who was diagnosed with ALS in 2009. Catch the Cure has raised nearly $30,000 in its first two weeks; learn more about Adam and his initiative at www.catch-the-cure.com.
Project A.L.S. is proud to announce its team for the 2012 ING New York City Marathon.* Led by Project A.L.S. Co-Founder and President Meredith Estess, a dozen people whose lives have been affected by ALS are joining together to run for a cure. Learn more about each runner’s story and support them as they fight to conquer the New York City marathon and to end ALS at fundraise.projectals.org/nycmarathon
March 21, 2012 - Project A.L.S. advisor and funded scientist Dr. Thomas M. Jessell has been named recipient of the 2012 Gairdner Award. This prestigious award, given by the Gairdner Foundation in Toronto to celebrate the world’s most creative and accomplished biomedical scientists, honors Dr. Jessell’s work in understanding nervous system communication. He received the award “for research in defining the genetic and molecular pathways leading to the complex development of the spinal cord, with implications for therapeutic applications.” Specifically, he is honored for his work in identifying the direct connection between the sensory neuron and the motor neuron, and related discoveries that have given us the potential to treat and cure ALS.
The Gairdner Award represents well-deserved recognition of Dr. Jessell’s work: of the 298 individuals who have been honored with this award since 1959, 76 have subsequently won the Nobel Prize. Dr. Jessell is a brilliant and tireless champion for neurodegenerative brain disease research and Project A.L.S. congratulates him.
Project A.L.S. held its fifth annual Women and the Brain, a night of comedy at Stand Up New York. Longtime supporter Caroline Rhea hosted. Ms. Rhea, Judy Gold and Susie Essman headlined.the event, which was sponsored by Regina Kulik Scully. The evening highlighted crucial brain disease research by women in the Project A.L.S./Jenifer Estess Laboratory for Stem Cell Research with a video about MD-PhD student Bethany Kerner. Watch the video at http://projectals.org/events-media/lab-challenge.html.
Strike three and you’re…on! On October 27, the Project A.L.S. family hit the Lucky Strike lanes for the 14th annual Tomorrow is Tonight event in Manhattan. Columbia University and The Frye Company sponsored the affair, which featured bowling until midnight, music, dinner, and a celebrity studded poker tournament. Thanks to the 650 guests who made the night—and research advances—possible.
On November 6th, 2011, nine-year-old Avery Neidrowski of Reading, Pennsylvania, will spend an entire day in silence to raise money for Project A.L.S. Her day of silence is in memory of her grandfather, John A. Wetherhold , whose ability to speak was destroyed by ALS. Support Avery’s fight to cure ALS by pledging a few dollars for each hour she is silent by clicking here.
There have been few, if any, collaborations in ALS research, as productive as those between the laboratories of Kevin Eggan (Harvard), Chris Henderson and Hynek Wichterle (Columbia), and the Project A.L.S. Jenifer Estess Laboratory for Stem Cell Research. The entire team, which was responsible for generating the first patient-specific motor neurons from iPS (induced pluripotent stem cell) technology—the achievement was named by Time magazine as Medical Breakthrough of the Year in 2008--met recently on October, 2011, in New York. Scientists used the day to share recent data, observations, and fine-tune shared strategies for the next six months.
Proceeds from Rob Morrow’s Short Story to Benefit Project A.L.S.
Proceeds from Project A.L.S. Board Member Rob Morrow’ Short Story, “The Actor’s Nightmare” will benefit research. Download a copy for only $2.99 by clicking here
After completing a cross-country bike trek raising over $20,000 in memory of John Sullivan, boyhood friends TJ Sullivan and Jim Forrey visited the Project A.L.S. lab and met the scientists their efforts helped to fund.
Pre-Spin: Billy Baldwin, Debbie Wilpon, Martha McCully, Katie Couric and Kyle McLaughlin
July 2011 - Project A.L.S. held its first SummerSpin at the Flywheel Studio in Easthampton on Sunday July 31st. A full house of 57 dedicated riders pedaled, led by incredible instructors Ruth Zuckerman and Marion Roaman. Celebrity riders included Billy Baldwin, Katie Couric, Kyle MacLachlan and “Boardwalk Empire” actor Vincent Piazza also put their mettle to the pedals to help raise funds for this important cause. Over $38,000 was raised for Project A.L.S. research.
McLaren family before the Gala
Headmaster with IMSA students
Scientist Kevin Eggan processing credit card donations
June 2011 - On Friday June 24th, IMSA- Illinois Mathematics and Science Academy hosted ‘ALS Awareness Night’ a gala event to raise awareness of ALS and to advance the IMSA-Project A.L.S. partnership. Held in Naperville, IL, the event included dinner, silent and live auctions and entertainment. Dr Eric McLaren, IMSA Principal who has ALS, introduced an educational program with Project A.L.S. Founder and Director of Research Valerie Estess, along with award winning scientist, Dr Kevin Eggan. ALS activist and actor-comedian Richard Kind spearheaded the live auction. At the conclusion of the highly successful evening, over $60k was raised to benefit Project A.L.S. Project A.L.S. offers accolades to everyone involved at IMSA for a wonderful evening and welcomes IMSA student Vivian Zhang to its research lab as an intern this summer.
Memory of Father Inspires Epic U.S. Bike Trek to Benefit ALS Research
On Friday May, 20, 2011, boyhood friends Taylor 'TJ' Sullivan and Jim Forrey will bike the first of 3,300 miles, from San Francisco, California, to Yorktown, Virginia, to benefit Project A.L.S.
Mr Sullivan was inspired to ride by the memory of his father, John, who died from ALS in 2009. Mr. Forrey will join him for the grueling journey, which comprises 16 states, 3 mountain ranges, and 100 miles of biking per day. Friends and fans can follow the college sophomores, at www.coasttocoastforthecure.org
"TJ and Jim represent true advocacy, turning the loss of a hero into a cause we can all relate to," said Valerie Estess, director of research for Project A.L.S. "Project A.L.S. is proud that these two young leaders have aligned forces with us against ALS and related brain diseases."
100% of all funds raised will be directed to Project A.L.S.
Actor Julianna Margulies Names Project A.L.S. Her Charity
The Emmy Award winning star of The Good Wife named Project A.L.S. her charity of choice in the 2010 holiday issue of InStyle magazine. Juliana says: "My friend Jenifer Estess, a theater producer, was diagnosed with the neurodegenerative disease ALS when she was 35. Jenifer and her sisters began Project A.L.S. in order to help further the cause of stem-cell research, and I believe it's vital to finding a cure.
So far we've had great success."
View the complete article
On May 18, 2010 Northport High School students presented Project A.L.S. with a check for $125,000 which they raised at their annual fundraiser 'Mid Summer Nights Dream'.
MOVE FOR ALS SPARKS GLOBAL GIVING IN THE FIGHT
AGAINST DEADLY BRAIN DISEASES
World Historian Tony Judt Inspires Epic Bike Trek Across U.S. to Benefit Project A.L.S.
(April 15, 2010) On May 25, 2010, two young men will begin MOVE FOR ALS, a much anticipated two-month, 3600-mile bike trek from Astoria, Oregon to Brighton Beach, New York, in honor of eminent historian Tony Judt, who has ALS, (Lou Gehrig’s disease). The goal of the epic trek is to raise funds for Project A.L.S., which leads research toward treatments and a cure for the deadly brain disease. Major national media and social marketing campaigns are underway.
Saul Goldberg, a charismatic 24-year-old, started MOVE FOR ALS to honor his former professor and mentor Mr Judt. Mr. Goldberg and his friend, Augustin Quancard, are the cyclists.
“Saul Goldberg is a force. He epitomizes volunteerism, advocacy, and the ingenuity of his generation,” said Meredith Estess, president of Project A.L.S, which receives 100% of the proceeds from MOVE FOR ALS.
Project A.L.S. is promoting the thrilling ride across country via social marketing networks including Twitter, Facebook and Vimeo. In under three weeks since the website went live, MOVE FOR ALS has already attracted $20,000 in online donations: www.moveforals.com
“People from all over the world are donating $1…$5…$10. We’re hearing from supporters in Bangkok and Boston, Tanzania and Trinidad,” she added. “We haven’t seen a global outpouring like this before. MOVE FOR ALS is way bigger than a bike ride.”
MOVE FOR ALS was inspired by Tony Judt, renowned author of the current bestseller, Ill Fares the Land, and the acclaimed Postwar: A History of Europe Since 1945. Professor Judt has taught at University of California, Berkeley, Oxford University, and currently teaches at New York University. Almost two years ago, Judt was diagnosed with ALS, an untreatable neurodegenerative disease that is closely related to Parkinson’s and Alzheimer’s. Experts say that breakthroughs in ALS research will inform approaches to all related brain diseases.
Every single dollar raised by MOVE FOR ALS through its website (www.moveforals.com) will be directed to Project A.L.S. research, including cutting-edge stem cell approaches, genetics studies, and accelerated drug screening. Event sponsors include Project A.L.S., Adventure Cycling Association, The New York Review of Books, Penguin, Garmin, Shimano and Ride the Zone.
Live coverage of the event begins on May 25 and continues through July 25, when Goldberg and Quancard finally arrive in Brighton Beach, in time for sunset and a swim. Fans may follow their cross-country progress live on the MOVE FOR ALS website: www.moveforals.com
View the full Project A.L.S.™ press release
January 14, 2010 — I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease. Motor neuron disorders are far from rare: Parkinson's disease, multiple sclerosis, and a variety of lesser diseases all come under that heading. What is distinctive about ALS—the least common of this family of neuro-muscular illnesses—is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration.
In effect, ALS constitutes progressive imprisonment without parole. First you lose the use of a digit or two; then a limb; then and almost inevitably, all four. The muscles of the torso decline into near torpor, a practical problem from the digestive point of view but also life-threatening, in that breathing becomes at first difficult and eventually impossible without external assistance in the form of a tube-and-pump apparatus. In the more extreme variants of the disease, associated with dysfunction of the upper motor neurons (the rest of the body is driven by the so-called lower motor neurons), swallowing, speaking, and even controlling the jaw and head become impossible. I do not (yet) suffer from this aspect of the disease, or else I could not dictate this text.