SpongeBob Creator Stephen Hillenburg diagnosed with ALS

Stephen Hillenburg SpongeBob SquarePants Creator
Stephen Hillenburg, SpongeBob SquarePants Creator

Many of us have been enjoying SpongeBob Squarepants since it started back in 1999. The ALS Association Greater New York Chapter is saddened to learn that SpongeBob creator Stephen Hillenburg has ALS. Hillenburg released this statement to Variety:

“I wanted people to hear directly from me that I have been diagnosed with ALS. Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”

You can read the Variety article here.

Our thoughts are with Stephen and his family. Hillenburg says he will continue to create new SpongeBob Squarepants episodes and has no intention of slowing down anytime soon.

Senate Passes 21st Century Cures Act, December 7th

Senate Passes 21st Century Cures Act

Yesterday, the Senate passed the 21st Century Cures Act, sending the groundbreaking legislation to President Obama’s desk for a signature. The new law will provide billions of dollars to help accelerate the discovery, development, and delivery of promising new treatments by funding research and streamlining the drug review process. Importantly, the bill also will help preserve access to complex rehab technologies (CRT) power wheelchair accessories.

The 21st Century Cures Act is groundbreaking legislation that has taken over two years of negotiations. Thank you to all of the ALS Advocates who wrote letters, made phone calls and spoke to legislators about the legislation. Because of your hard work, ALS Association priorities were included in the final legislation. Continue reading Senate Passes 21st Century Cures Act, December 7th

Gleason Movie Premieres in NYC

Gleason Movie Premier

In the photo left to right: Scott Fujita of Team Gleason, NFL player Victor Cruz, NFL player Justin Tuck, attending the NYC Premiere of Gleason.

Honest, raw…those are the words you could hear uttered as you left the Henry Luce Theatre, for the New York premiere of Gleason.

Jenn Tinnelly, Greater New York Chapter Young Professionals Group Patient Services Committee Chair, was one of the guests at the New York City premiere. She lost two uncles to ALS. Tinnelly admits the movie hits close to home and was hard to sit through if you have a close connection to ALS.

“It was tough to watch, but it had to be real and raw to shake people up, take them out of their comfort zones and make them want to step up and get involved,” Tinnelly said.

Gleason was an emotional rollercoaster, in every sense of the word. You know going into it watching Steve Gleason go from football hero, to fighting ALS is going to be sad, but what you don’t expect are the brief moments of laughter that can be heard throughout the theatre. The random jokes Gleason makes to lighten the mood, or the silly, goofy comments his wife makes, even at one point staring into the camera and uttering, “I’m still funny,” simultaneously reminding herself and the audience that through it all she retains her sense of humor.

Gleason’s wife, Michel Varisco, takes on much of the movies focus, highlighting her devotion and dedication to her husband. The movie sheds light on what it means to be a caregiver, the sacrifice, the hard work, and the toll it takes on Varisco throughout the progression of Gleason’s disease.

Just ask Rose Joyce, GNY Chapter Young Professionals Group Advocacy Committee Chair, whose aunt died of ALS 13 years ago. Joyce says the impact on caregivers is often overlooked.

“There is a real focus on the role that caregivers play with any ALS diagnosis which is important. In Steve’s case that includes friends, family and even NFL teammates! It also highlights the affect that full time caregiving can have on a person. This movie really shows many of the impacts that ALS has on not only people with ALS, but family and friends,” Joyce said.

The movie is largely told through journals that Gleason races to produce for his son Rivers, before he loses his ability to speak. The journals are touching, sad, poignant and sometimes even funny as they chronicle the 4 years following Gleason’s ALS diagnosis. There is no question it’s hard to watch Gleason go from the strong punt blocking New Orleans Super Bowl hero, to wheelchair bound, communicating only through eye tracking technology. However, it’s impossible through it all, to ignore his strong spirit, sense of humor, and the love he has for his family that keeps him fighting.

Gleason’s story will now be heard around the country and is expected to pull in a wide audience, raising awareness for ALS.

Gleason will appeal to a mainstream audience, providing knowledge about ALS to those who may have little understanding about how devastating the disease is. Steve Gleason and his wife Michel were extremely brave to document their story and their struggles to share with America,” said Kristen Cocoman, ALS Association, Greater New York Chapter’s Director of Marketing and Special Events, who also attended the film’s premiere said.

Gleason wants his story to be proof, that everyone should keep on fighting, keep on sharing their stories, and one day there will be a cure.

Gleason officially opens to audiences on July 29th. Below is a list of opening dates and where you can find Gleason playing in a theatre near you.


Location

Opening Date

Theatre

NEW YORK

29-Jul
AMC Lincoln Square
NEW YORK
30 – Jul
Landmark Sunshine
NY/NJ
5-Aug
Empire, Kips Bay, Jacob Burns, Bam Rose, Chelsea, Kew Gardens, Garden State Paramus
NEW JERSEY
12-Aug
Bethal Cinema, Landmark 9, Clairidge 6, Tenafly 4, Regal East Hapton, Manhasset Cinema, Cinema 100 Quad, Bronxville 3

 

ANNOUNCING Every Drop Adds Up

Pat Quinn is a co-founder of the ALS Ice Bucket Challenge. He was diagnosed with ALS in March 2013.

Last year, I accepted a Webby Award in New York City for co-founding the ALS Ice Bucket Challenge. Acceptance speeches are limited to just five words, so when I went on stage I said, “Every August Until A Cure.”

Since then, this mantra has gone on to become a rallying cry of the ALS community. It’s been awesome to see the progress we’ve enabled since the Challenge soaked the world in August 2014.

I’ll be honest with you: while a lot of money was infused in to ALS over the last two years, we need to do more if we want to bring a treatment to market.

Help me establish every August as the month we take pause to make a difference in the fight against ALS!

Every contribution, no matter how large or seemingly small, whether a financial gift or a selfless act that brings awareness to ALS – adds up. You see…  Every Drop Adds Up.

Help finish what we started. Visit the Every Drop Adds Up page on our website to find out how you can make an impact again this August. And get involved in the Greater New York Chapter’s Walk and other events, because every step makes a difference and Every Drop Adds Up!

Pat Quinn
Co-founder, ALS Ice Bucket Challenge
Team Captain, Quinn for Win, Westchester Walk to Defeat ALS

The ALS Association Awards Annual Rand Prize to ALS Expert and Patient Advocate

At its upcoming Leadership Conference in Atlanta, Georgia, on February 4, 2016, The ALS Association will present Dallas Forshew, RN, BSN, the Lawrence A. Rand Prize, an annual award that recognizes the “courage, passion, integrity and commitment of those serving the ALS community as volunteers, healthcare professionals, educators/communicators or in other ways contributing to the quality of life of people living with ALS.”

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

Forshew’s dedication to the ALS community is clear in the wide range of activities to which she gives her personal and professional time. As an active member of The ALS Association Golden West Chapter, Forshew serves on its care services committee and attends many community outreach events, like the chapter’s Walks to Defeat ALS and Napa Valley Ride to Defeat ALS.

She works tirelessly to advocate and raise awareness of the disease at local, state, and national levels, and has become well-known throughout the ALS community for her knowledge of the disease and its effect on those living with it. Forshew was one of a panel who testified in support of funding an $18 Million research grant from the California Institute for Regenerative Medicine.

Forshew builds deep relationships with families and caregivers facing ALS staring from the first diagnostic meeting and frequently makes home visits to those in need. She spends at least one weekend a month travelling across the state of California to lead support groups for people with ALS and their families, sharing with them the latest information about new research studies and open clinical trials. Her introductory presentation, THE ABC’s OF ALS, has been presented to hundreds of newly diagnosed families at these support groups and has been viewed over 1000 times on the Golden West Chapter’s YouTube channel and at training sessions for Association professionals.

According to Forshew, “the patient’s experience would be diminished without our care… and the family members will remember every kindness for the rest of their lives.”

Forshew is a regular participant in the California ALS Research Summit and has been a key staff member at two ALS Certified Treatment Centers of Excellence: the ALS Treatment and Research Center at UCSF and the Forbes Norris ALS Treatment and Research Center at California Pacific Medical Center. She has also served on the Association’s certification committee for new centers. In her capacity as a clinical trial evaluator and designer, she has advocated for the patient perspective and has helped influence trial design and management in favor of patient issues. Additionally, Forshew was the only nurse member of the American Academy of Neurology’s ALS Practice Parameter Task Force, helping to develop, author, and later update its important guidance document. She has written patient care manuals and has over 50 publications to her name, including many book chapters about ALS.

In nominating her for the Rand Prize, Fred Fisher, President & CEO, The ALS Association Golden West Chapter wrote: “Dallas is loved by those who are facing this disease and admired by all of us who care for people with it.”

For more information on the award presentation, please contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org.

About the Rand Prize

The Rand Prize was established by The ALS Association Greater New York Chapter and continued by The Association in honor of Lawrence A. Rand, a founding Trustee and a former National Chairman of the Board of Trustees of The Association. Rand has tirelessly advocated on behalf of people and their families living with ALS. The disease has personally impacted him as it took the lives of his father-in-law, sister-in-law, and wife, Madelon. Past recipients of the Rand Prize include Shonda Schilling, the wife of onetime Boston Red Sox pitcher Curt Schilling; NFL player Pete Duranko; and the internationally renowned neurologist Dr. Richard Olney, who died from ALS in 2012.

The ALS Association Funds $1.3 Million in New Grants to Advance ALS Research

research news banner 2015Washington, D.C. (December 9, 2015) — Today, The ALS Association announced its support for nine new research grants totaling $1,344,346 to further the development of new treatments for amyotrophic lateral sclerosis (ALS). These research awards include ALS Association-Initiated grants, Investigator-Initiated grants, and Milton Safenowitz Postdoctoral Fellowships.

Continue reading The ALS Association Funds $1.3 Million in New Grants to Advance ALS Research

The ALS Association Funds $1.3 Million in New Grants to Advance ALS Research

ALS Association-Initiated Grants

The ALS Association defined areas of specific focus for research and invited experts in their respective fields to submit proposals. The ALS Association convenes a review board to discuss proposals and makes selections based on the merits of each one. ALS Association-Initiated Grants include the following:

Continue reading The ALS Association Funds $1.3 Million in New Grants to Advance ALS Research

CALL FOR RESEARCH ABSTRACTS Multi-year, Starter and Post Doctoral Fellowship

DUE JANUARY 15, 2016

The ALS Association Research INVESTIGATOR-INITIATED RESEARCH GRANT PROGRAM supports INNOVATIVE research of high scientific merit and relevance to amyotrophic lateral sclerosis (ALS), offering investigators awards in the following categories:

Continue reading CALL FOR RESEARCH ABSTRACTS Multi-year, Starter and Post Doctoral Fellowship

ALS Association and Target ALS to Expand Tissue Core for ALS Research

research news banner 2015The ALS Association and Target ALS announced the launch of a new collaborative effort to expand the collection of biofluids from people with ALS, to be used for research to better understand the disease and ultimately develop new treatments.

The ALS Association will be investing $1,392,668 over the next 38 months. Funding from The ALS Association will allow pre-mortem biofluids (serum, plasma, and cerebrospinal fluid) to be collected and stored at the sites that comprise the Target ALS Postmortem Tissue Core at Barrow Neurological Institute/Saint Joseph’s Hospital in Phoenix, Columbia University in New York, Georgetown University in Washington D.C., Johns Hopkins University in Baltimore, and University of California at San Diego. Detailed genetic analysis will be performed on all these cases at The New York Genome Center, all the data will be linked, and all of the samples and data will be made available for researchers around the world.

The Target ALS Postmortem Tissue Core is a unique resource in the field of ALS research, providing high-quality post-mortem tissue for academic and industry researchers throughout the world. Target ALS has invested $1.04M to date into the core. The addition of pre-mortem biofluids from the same individuals will greatly expand the potential utility of the samples, by allowing researchers to explore biomarkers in biofluids that correspond to changes in tissues.

“The studies that will be made possible by the addition of biofluids to the Tissue Core have the potential to deepen the understanding of the ALS disease process and, through discovery of new biomarkers linked to specific aspects of the disease, accelerate the search for new treatments,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A. “We are very pleased to be partnering with Target ALS on this important initiative.”

“This partnership has created a first-of-its-kind resource to lower the barriers for, and accelerate the pace of translational research in ALS. Target ALS is delighted to partner with The ALS Association on this much-needed initiative”, said Target ALS Executive Director Manish Raisinghani, M.D., Ph.D.

About TARGET ALS: Target ALS is a privately funded international consortium of researchers from academic and biotech/pharma laboratories entirely focused on finding a treatment for patients living with ALS. We fund Research Consortia that have accelerated identification and validation of new targets for treatment of ALS, Springboard Fellowships to support work of emerging research leaders, and core facilities that lower barriers for cutting edge ALS research worldwide. For more information visit our website at www.TargetALS.org.

ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects neurons (nerve cells) in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and no life-prolonging treatments for the disease.

Making A (Lemonade) Stand Against ALS

Hanna-2

In the children’s book, The Lemonade Wars, two siblings compete over who can make the most money from their lemonade stands in their last week of summer vacation. Inspired by the tale in which the author actually relates the children’s business endeavors to real-world marketing lessons, 10-year-old Hanna Schiciano had an idea. She was going to start her own lemonade stand. When her mother Ondrea asked Hanna what she was going to do with the money, her daughter’s answer was very clear. “Without hesitation, she said ‘ALS.’ I almost cried.”

In 2013, Hanna’s grandmother passed away from ALS and she had benefited from the Greater New York Chapter’s services, including equipment lending and attending the ALS Clinic at Hospital for Special Surgery in New York City.

Hanna and her grandmother, Edythe Levitt, had been very close. “My mom can talk a lot and so can Hanna,” said Ondrea. As her grandmother lost the ability to speak they continued to converse by typing everything she wanted to say on augmentative communication equipment. Living near each other in Westchester, NY, the three generations spent every week together. “Hanna was very supportive of her grandmother at the time.”

One weekend last summer a determined young Hanna spent her day setting up her stand, flagging down cars and selling lemonade at the bottom of her driveway. “I thought that maybe if I did that and if I kept on working getting people to come to my lemonade stand I could donate it to ALS,” Hanna said. She took on all of the responsibility drawing up her signs, making the lemonade and setting up the stand. “I was just her assistant,” her mom insisted. After two hours of active marketing by waving down cars, she had raised $43. The money will go to the family’s Westchester Walk to Defeat ALS Team “Walking For Edythe.”

That Hanna did the whole project herself is something that she feels would make her grandmother happy. “She would be proud that I did it all by myself with no one’s help,” said Hanna. All the while her grandmother was never far from her mind. “I was doing it and I thought that I really missed her a lot.”

Team “Walking For Edythe” will be at the Westchester Walk to Defeat ALS on June 14th for the third year in a row. And as they return to walk, the lemonade stand will also be back again. “I will do another one,” Hanna said.


Click here to find a Walk to Defeat ALS near you!