Collaboration is critical to scientific research, which is why the Ice Bucket Challenge was so transformational to ALS research, particularly in the field of genomics.

Eighty years ago on July 4, Lou Gehrig gave one of the most famous speeches in American history. His speech marked his retirement from baseball because of his recent diagnosis of ALS. Gehrig was honored by many on the field that day, and his number 4 was retired, the first time a player had ever had his jersey retired. The New York Times called it “one of the most touching scenes ever witnessed on a ball field.”

I call ALS “the nice guys’ disease.” For, as indiscriminate as it appears, ALS certainly has a way of finding the best and most courageous people to attack. Watching people endure the wasting of their muscle control and seeing them defiant in the face of the sure and steady loss of communication and independence, makes me defiant too. People with ALS fight the disease with great courage. Seeing the fire and determination of my patients inspires me every day. Our team puts that inspiration to work in the clinic and in my lab, where we are on a promising path to finding effective therapies to slow ALS.

Furthering our understanding of disease and the creation of effective therapies won’t happen in a vacuum. My peers and colleagues in the medical research community know first-hand the necessity of global collaborations that bring diverse specialties into the process of understanding complex medical mysteries such as ALS.

The ALS Association has always been committed to transparency, including providing complete and accurate financial information on our website. We continue to receive the highest ratings from charity watchdog groups tasked with reviewing our spending, fundraising, and management.

There was a lot of skepticism in the research community when we proposed development of designer DNA drugs as a way to treat ALS. This therapy is an approach that uses DNA-based designer drugs to "silence" genes that are known to cause a particular disease. The ALS Association was the first funding organization to invest in designer DNA technology research and development for therapy in neurodegenerative disease.

We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.

Last week, Pete Frates and Pat Quinn unveiled a new campaign – Challenge Me -- to celebrate the fifth anniversary of the ALS Ice Bucket Challenge and reengage the millions around the world who took the Challenge. Pat and Pete brought the Challenge Me ethos to life with the Ice Bucket Challenge and they have continued to inspire the entire ALS community over the last five years.

Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows.

Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows. The awards were founded in memory of Mr. Safenowitz by the Safenowitz family – through The ALS Association Greater New York Chapter. The program encourages young scientists to enter and, importantly, to remain in the ALS field.

Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows. The awards were founded in memory of Mr. Safenowitz by the Safenowitz family – through The ALS Association Greater New York Chapter. The program encourages young scientists to enter and, importantly, to remain in the ALS field.

Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows. The awards were founded in memory of Mr. Safenowitz by the Safenowitz family – through The ALS Association Greater New York Chapter. The program encourages young scientists to enter and, importantly, to remain in the ALS field.

The ALS Association is launching a campaign to engage kids and teenagers in the fight against ALS, issuing the ALS Youth Challenge and celebrating the first-ever ALS Youth Action Day. Our chapters across the country will be partnering with youth organizations in their communities to identify future activists and philanthropists who will help to defeat ALS by accepting the ALS Youth Challenge.

Bipartisan Legislation Eliminates Five-Month Waiting Period for SSDI Benefits for People Diagnosed with ALS
The ALS Disability Insurance Access Act was reintroduced in the 116th Congress this week as S.578 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill in the House as H.R.1407.

Carmen Schentrup had a dream: a world without ALS. Her career aspiration was to become a medical researcher and to be part of The ALS Association’s work to cure ALS. Tragically, Carmen’s life was cut short in the horrific Parkland shooting. However, her dream to contribute to a cure is being realized in a significant way.

Every two years, hundreds of ALS health care professionals come together to discuss new trends, share best practices and guidelines, exchange ideas and successes, and talk about challenges and potential solutions. To capture the collaborative power of the 2018 event in Fort Worth, Texas – our largest-ever Clinical Conference, with more than 500 attendees – we put together a short video highlight reel.

At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.

We had the pleasure of joining ALS scientists, clinicians, health care professionals, industry and advocacy partners, and, most importantly, people with ALS and their families at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association last month. It’s always a great opportunity to come together and learn from each other.

We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.

The ALS Association teamed up with a group of expert data analysts at Mastercard who spent more than 24 consecutive hours to help our national office and chapters gather insights into improving operations and strategies to advance our mission to find a cure for ALS.