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New Cause Campaign Benefits ALS Research during May’s ALS Awareness Month
May 1, 2017 — Every 90 minutes someone in the country is diagnosed with Amyotrophic Lateral Sclerosis or ALS, a neuro-degenerative disease also known as Lou Gehrig’s Disease. Most people with ALS survive just 2-5 years after their first symptoms, with no known cure. However, ALS is not an incurable disease; it is an underfunded one.
During May’s ALS Awareness Month, Lilly Pulitzer is spreading this critical message across its 41 retail stores and lillypulitzer.com, encouraging its many customers to support the vital cause and shop for a cure to end ALS. The day-long cause program and fundraising effort will support the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotech with more than 30 scientists singularly focused on finding effective treatments and an ultimate cure for ALS.
The campaign takes place at Lilly Pulitzer stores or through the website lillypulitzer.com, May 6, 2017—to locate a store near you, head here. To support ALS TDI and its urgent work, Lilly Pulitzer will donate 10% of the net sales of products purchased at Lilly Pulitzer stores or ordered online at lillypulitzer.com on that day (up to $75,000).
“Lilly Pulitzer’s efforts and its many generous customers will help us move one step closer to a world where effective treatments – and even a cure – for ALS are within reach,” says Augie Nieto, Chairman, ALS Therapy Development Institute, and Chief Inspiration Officer, Augie’s Quest to Cure ALS, who has lived with ALS for more than 12 years. “We’re lucky to have a few leading brands from the fashion industry – with Lilly Pulitzer at the helm – join our fight during this ALS Awareness month, thanks in large part to the efforts of one of Augie’s Quest Leadership Council members and fashion industry pros, Michael “Boomer” Wallace.”
Lilly Pulitzer and its many customers will help make it possible for ALS TDI to develop a promising new drug that could forever change the course of ALS. It’s called AT-1501 and is currently in the early stages of clinical trials, but needs additional investments to bring it fully to market.
“We’re at a critical tipping point today, with promising treatments on the near horizon that could change the course of ALS forever and the lives of so many affected. We won’t be successful without dedicated corporate partners like Lilly Pulitzer,” adds Nieto.
“We are honored to support ALS TDI today and we do so very much with our dear friend Boomer in mind. We recognize that we’re ‘stronger together’ in the fight against ALS and want nothing more than to help fund research to better the lives of those affected.” Janie Paradis, Senior Vice President of Creative Communications and Marketing, Lilly Pulitzer.
About Lilly Pulitzer
Lilly Pulitzer speaks to generations of rule-breaking, sun-followers who celebrate the spontaneous bohemian spirit of Lilly Pulitzer. The company’s effortless fashions are truly born from an original. It all happened by accident, when in 1959-ish Lilly (McKim) Pulitzer—a stylish Palm Beach hostess and socialite whose husband Peter Pulitzer owned several Florida citrus groves—needed a project of her own. With Peter’s produce, she opened a juice stand on Via Mizner, just off Worth Avenue in Palm Beach. Lilly Pulitzer’s business was a hit, but squeezing oranges, lemons, limes, and pink grapefruit made a mess of her clothes. Realizing that she needed a juice stand uniform, Lilly asked her dressmaker to design a dress that would camouflage the stains. The result? A comfortable sleeveless shift dress made of bright, colorful printed cotton in pink, green, yellow and orange. Although her customers liked Lilly’s juice, they loved her shift dresses. Soon Lilly was selling more shift dresses than juice, so she decided to stop squeezing and focus on designing and selling her “Lillys.” Lilly Pulitzer became a fashion sensation and a creator of authentic American resort wear as we know it. The brand is now more popular than ever and continues to create authentic printed styles straight from the in-house print design studio. For more brand history and juicy stories, head here.
About ALS Therapy Development Institute & Augie’s Quest to Cure ALS
ALS Therapy Development Institute is the world’s foremost drug discovery center focused solely on ALS, based in Cambridge, Mass. As a nonprofit biotech, ALS TDI operates without regard to profit motive or politics. Led by people with ALS and drug development experts, ALS TDI is funded by a global network of supporters unified to ending ALS in our lifetime. Learn more at www.als.net.
Augie Nieto is the successful fitness industry mogul behind Lifecycle, Life Fitness, and Octane Fitness. He was diagnosed with ALS in 2005. With guidance from a team of friends, researchers, and medical experts, Augie and his wife, Lynne, came to understand the bleak reality that ALS lacked the critical support or widespread research needed to find treatment and cures. Together, they co-founded Augie’s Quest to Cure ALS. Through events, partnerships, and fundraising activities around the globe, Augie’s Quest drives success by funding cutting edge ALS research at the ALS Therapy Development Institute (ALS TDI). For more information, please visit www.augiesquest.org.
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We’ve lived with ALS for 12 years now, getting our diagnosis the Spring of 2005. Amyotrophic Lateral Sclerosis or ALS, also known as Lou Gehrig’s disease, is a neuro-degenerative disease affecting far too many people and families today. Most people with ALS survive 2-5 years after their first symptoms, with no known cure. My wife, Lynne, lovingly and jokingly refers to me as her “freak of nature.” I’m certain my living for more than a decade with this atrocious disease is proving her right — and that’s something I’ve promised to keep doing for as long as possible.
Back then, Lynne and I made the tough decision to really take on ALS, both as a family and in founding Augie’s Quest to Cure ALS. We made a conscious, deliberate choice to live with ALS shortly after our diagnosis. And for me, that meant throwing absolutely everything we’ve got into curing this disease that affects far too many.
When I look back, I’m still shocked by what seems possible today, especially with a promising drug, AT-1501 in the pipeline – a treatment our innovative team of researchers at the ALS Therapy Development Institute is committed to getting out into the marketplace as soon as possible – to help slow the progression of ALS.
Today marks the start of another ALS Awareness Month. But for us, this annual month is different because we are at a tipping point. Through Augie’s Quest, we’re truly defying expectations and changing the course of ALS forever, because simply put: ALS is not an incurable disease; it is only an underfunded one.
That’s where our partners from two very different industries have stepped up – first in fitness, and now following suit in fashion. I’d argue, both were rather unlikely suspects in driving needed funding to effectively seek an ALS cure and cutting-edge research.
ALS steals people’s muscles, and robs them of every benefit exercise provides. That’s why for more than a decade, the fitness industry has refused to accept that fate, rallying hundreds of companies, countless professionals, staff, studio and club members and local communities to take on this disease and unifying cause.
Lucky for us, Augie’s Quest to Cure ALS was the challenge the fitness industry dared to accept 12 years ago, raising a record-breaking $3.5 million in the last year alone and a majority of the more than $56 million total since our inception, as announced and celebrated during the recent International Health, Racquet and Sports Association’s (IHRSA) International Tradeshow and Convention and its BASH for Augie in Los Angeles. Of that total, Orange Theory Fitness raised $2.08 million during its inaugural #IBurn4ALS campaign, lasting just two weeks via 620 of its popular locations. The Orange Theory Fitness program supporting Augie’s Quest was both the largest in-club fundraiser to date and largest single-year campaign ever for the organization.
The fitness industry’s collective competitive spirit and dedication to our cause is changing the landscape of this disease. And its success and momentum is inspiring leading brands from the fashion industry, to join our fight during ALS Awareness month.
Lilly Pulitzer, Rue La La, Ramy Brook, Jack Rogers, Tori Richard, Soludos and Vineyard Vines are devoting a percentage of sales to raise funds and awareness for the disease via special cause promotions month-long. Specifically, each of the brands and their many customers will help the ALS Therapy Development Institute make AT-1501 a reality for so many affected by ALS. The drug is currently in the early stages of clinical trials, but needs additional investments to bring it fully to market.
The fashion industry’s generous efforts this May will help us move one step closer to a world where effective treatments – and even a cure – for ALS are within reach. And these new partners, in large part, found Augie’s Quest and our cause through the efforts of one of our leading ALS ambassadors, volunteer, and a fashion industry and business visionary, Michael “Boomer” Wallace.
Together, we’re looking forward to what now seems possible, and we’re taking on ALS in ways none of us could have predicted. These twelve years have been nothing short of incredible. We can only imagine what the next 12 months will prove.
Thank you, to our friends, to the entire fitness industry and our new fashionable friends for accepting our challenge of Augie’s Quest, for believing in us and our big dream – some 12 years ago – that together we could actually cure ALS.
It isn’t a pipedream anymore.
Augie Nieto
Founder & Chief Inspiration Officer, Augie’s Quest
Chairman ALS Therapy Development Institute
Augie Nieto is the successful fitness industry mogul behind Lifecycle, Life Fitness, and Octane Fitness. He was diagnosed with ALS in 2005. With guidance from a team of friends, researchers, and medical experts, Augie came to understand the bleak reality that ALS lacked the critical support or widespread research needed to find treatment and cures. Augie co-founded Augie’s Quest to Cure ALS. Through events, partnerships, and fundraising activities around the globe, Augie continues to drive success by funding cutting edge ALS research at the ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts. Augie’s story will soon be depicted in the feature documentary, “Augie,” a film by award-winning director James Keach and executive producer Eric Carlson. Learn more.
Laguna Beach Independent Newspaper
Raises $3.5 Million to Advance ALS Therapy Development Institute’s Promising New Drug Treatment, AT-1501, and Therapies for Thousands Living with the Disease
Los Angeles, March 14, 2017 – Amyotrophic lateral sclerosis or ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease affecting far too many people and families. It steals people’s muscles, and robs them of every benefit exercise provides. That’s why for more than a decade, the fitness industry has refused to accept that fate, rallying hundreds of companies, countless professionals, staff, studio and club members and local communities to take on this disease and unifying cause.
Augie’s Quest to Cure ALS is the challenge the fitness industry dared to accept, raising a record-breaking $3.5 million in the last year alone and more than $35 million total since its inception, as announced and celebrated during the recent International Health, Racquet and Sports Association’s (IHRSA) International Tradeshow and Convention and its BASH for Augie in Los Angeles. Of that total, Orange Theory Fitness raised $2.08 million during its inaugural #IBurn4ALS campaign, lasting just two weeks via 620 of its popular locations. The Orange Theory Fitness program supporting Augie’s Quest was both the largest in-club fundraiser to date and largest single-year campaign ever for the organization.
Every dollar raised via the industry directly benefits Augie’s Quest, the ALS research initiative led by Augie and Lynne Nieto on behalf of the ALS Therapy Development Institute (ALS TDI) in Cambridge, Mass. ALS TDI is the world’s first non-profit biotech with more than 30 scientists singularly focused on finding a cure for ALS.
Today, the fitness industry’s collective journey to change the course of ALS is also gaining momentum, with ground-breaking therapies on the horizon because of its unwavering support. Specifically, helping make it possible for ALS Therapy Development Institute to develop a promising new drug that could forever change the course of ALS. It’s called AT-1501 and is currently in the early stages of clinical trials, but needs additional investments to bring it fully to market.
“Augie Nieto is a pioneer. He once saw a world where fitness would boom, as the founder of Life Fitness. And today, nearly 12 years after receiving his ALS diagnosis, he and his wife Lynne are still proving how powerful exercise can be,” says John McCarthy, Chair, BASH for Augie. “I’m so proud of the passion, care and commitment that permeates the fitness industry around this critical issue. Because we’ve come together in such an innovative way, we’re one step closer to a world where effective treatments for ALS are within reach.”
“Our partners and donors from across the fitness industry are one in a million. Their competitive spirit, generous financial support and fierce commitment as a collective industry to actively champion the health of so many people affected by ALS is driving real change and research results,” said Augie Nieto, Chief Inspiration Officer, Augie’s Quest and Chairman, ALS Therapy Development Institute. “ALS is not an incurable disease; it is an underfunded one. ALS doesn’t have a fighting chance with the fitness industry in the ring.”
This year, Augie’s Quest additional top cause sponsors included IHRSA, ClubCorp, Newtown Athletic Club, The Atlantic Club, Jenny Craig, Greenwood Athletic and Tennis Club, Strong by Zumba and HydroMassage – each dedicated time, talent and significant resources in meaningful and creative ways to support the fight against ALS.
About Augie’s Quest
Augie’s Quest is dedicated to finding treatments and cures for ALS (Amyotrophic Lateral Sclerosis) and directly funds the ALS Therapy Development Institute, the world’s foremost drug discovery center focused solely on finding a cure for ALS. For more information, please visit www.augiesquest.org.
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Media Contact:
Kristen Barnfield, CK&D for Augie’s Quest
Kristen@ckdla.com and C: 312.203.0828
