About Us

We're here to transform the lives of people affected by neuromuscular disease.

Muscular Dystrophy Association Launches Multi-Faceted ALS Awareness & Fundraising Campaign Leading the Way for Life-Saving ALS Research & Care

NEW YORK, April 30, 2019 /PRNewswire/ --

 

Today, the Muscular Dystrophy Association (MDA) launched an extensive campaign to raise awareness about amyotrophic lateral sclerosis (ALS), with a focus on how innovative research and technology are bringing researchers one step closer to the next breakthrough and how MDA's multidisciplinary Care Center network is extending patients' lives.

"ALS is a devastating disease that doesn't discriminate," said MDA President & CEO Lynn O'Connor Vos. "Anytime anyone is diagnosed with ALS, MDA is here, supporting patients, families, and caregivers – and has been for nearly 70 years. This is an unprecedented time of discovery in neuromuscular disease and ALS, and whether we're providing world-class care or investing in innovative research and technology, MDA has led the way with decades of progress. Anytime anyone donates, we're one step closer to the next breakthrough. Throughout this campaign we are donating to research, collaborating with partners and convening patients to share their stories. Together, let's end ALS."

New ALS Grants Demonstrate MDA's Continued Leadership in Search for a Cure
MDA recently announced eight new grants totaling more than $2 million toward research and development focused on ALS. Highlights of this round of funding include a grant for the evaluation of whether gene editing can be a potential treatment for ALS caused by mutations in the superoxide dismutase 1 gene (SOD1) and a grant to help support the NEALS Consortium's biorepository, which contains tissues and fluids that are widely used by the community — including MDA-funded researchers — to advance ALS research.

Driving ALS Research and Providing ALS Care for nearly 70 Years
MDA's funding impact has led the way in innovations in ALS science and care for nearly 70 years, funding projects across the drug development spectrum, along with specialized care for tens of thousands of people diagnosed with ALS and their families. MDA supports more than 150 MDA Care Centers across the United States and Puerto Rico, with 48 centers designated as MDA ALS Care Centers.

L to R: Ed Tessaro and Dr. Jonathan Glass, MDA ALS Care Center at Emory University School of Medicine, part of MDA's National Care Center Network

Do You Know ALS?

In its role as a convener, MDA is also bringing together patients, doctors, researchers, and caregivers with other leaders to drive social conversation. The "Do You Know ALS?" series of stories will be featured on MDA's Strongly blog throughout May. The campaign will kick off with Ed Tessaro, who has actively worked to raise awareness about the need to raise funds and find a cure. He is serving as MDA's spokesperson for this year's campaign.

Engaging Community & Raising Funds Through Benefit Events & Partnership with Dutch Bros. Coffee

In addition to increasing consumer awareness, MDA is hosting seven fundraising galas to support the organization's groundbreaking ALS research. One of the signature events is New York City's 19th Annual MDA's Wings Over Wall Street Gala Event on May 22. Other signature events were hosted in Greensboro, NC; Chicago, IL; and Oklahoma City, OK with more events coming up this fall in Charlotte, NC; Atlanta, GA; and Appleton, WI. Attending one of these events or donating online funds research and care for people living with ALS.

Another prominent fundraising event is Dutch Bros. Coffee's 13th annual Drink One for Dane Day. The country's largest privately held coffee company takes one day to raise funds to celebrate the life of co-founder Dane Boersma, who died of ALS in 2009. On May 10, the company will donate proceeds from all sales at its 330+ locations in seven states to MDA. Dutch Bros. Coffee and the Boersma family started the Drink One for Dane campaign to help fund MDA's ALS research and Care Centers. In 2018, the company raised a record-breaking $1.3 million in a single day. Dutch Bros. Coffee has a goal to make 2019 the best year yet, breaking last year's record. Consumers can find a Dutch Bros. location near them by visiting dutchbros.com/locations.

MDA is also bringing ALS patients together on May 18 in Boston, MA for a symposium chaired by Dr. James Berry. To learn more and register to attend, click hereMDA Engage educational events are one-day events empowering individuals and families with knowledge and resources. Experts in the field of neuromuscular disease share information on topics such as best practices in clinical care, research and clinical trials, genetic information, and more. All MDA Engage events include dedicated social time to give families the opportunity to connect. Portions of the ALS Symposium will be recorded and posted on mda.org after the live event.  

MDA's Team Momentum will run to #EndALSwithMDA in the Byline Bank Chicago Spring Half Marathon\10K produced by Life Time on May 19 in Chicago, IL. Sign up here.

People who would like to end ALS today can donate at https://mda.org/endals.

About the Muscular Dystrophy Association

MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to approved, life-changing therapies across multiple neuromuscular diseases. We support the largest network of multidisciplinary clinics providing world-class care at more than 150 of the nation's top medical institutions, and each year thousands of children and young adults learn vital life skills and gain independence at MDA Summer Camp and through recreational programs. For more information visit mda.org.

SOURCE: Muscular Dystrophy Association