ALS Association’s National ALS Advocacy Day & Public Policy Conference

Published on 5 July 2013 in News
Cheval resident Gary Dassatti (far right) with ALS FL Chapter Board Member Warren Nelson and Senator Bill Nelson’s aide Kerry Allen.

Cheval resident Gary Dassatti (far right) with ALS FL Chapter Board Member Warren Nelson and Senator Bill Nelson’s aide Kerry Allen.

This past month nearly 2,000 people with Lou Gehrig’s Disease, family, friends and other advocates, including Cheval resident Gary Dassatti, gathered in Washington, D.C. during ALS Awareness Month for The ALS Association’s National ALS Advocacy Day and Public Policy Conference.

While in Washington Gary, among with other ALS advocates, met with aides in 4 Congressmen's offices (Representatives Hastings, Rooney, Posey and Bilirakis) as well as with aides for Senator Nelson and Senator Rubio. Gary says, “We were basically seeing if they were aware of what ALS is and asked for continued monetary support from the House and Senate for the ALS Registry (where data is entered by current living pALS (people suffering with ALS) to try to help find a commonality so that a cause may be found. Currently we have no idea what causes ALS, only that Military personnel are twice as likely to contract this horrible disease. We were also asking for continued monetary support for the ALS Research Program at the Department of Defense; this is very necessary, especially with the Military connection to ALS.”

Another individual who attended the conference’s Rally Dinner was Baltimore Raven O.J, Brigance, who has been living with ALS since May 2007 and has been a leading voice in the fight against the disease. It’s Brigance’s first time attending the conference, and it’s the first time they are having a rally to open the festivities. Former New Orleans Saints safety Steve Gleason, who, like Brigance, is also battling ALS, joined via Skype.

The ALS Association hosted this three-day conference in order to empower individuals from across the country with the tools to advocate for policies specifically designed to accelerate the development of treatments for ALS.

“During the 3 days, we heard speeches from prominent Scientists and Research Doctors on various issues regarding our cause,” says Gary. “We don't know any more now than we did when Lou Gehrig was diagnosed 73 years ago. Treatments – there are none yet. Our main goal in raising awareness and funding to the FL Chapter of ALS is to help with patient care.”

O.J., who served as one of the keynote speakers during the dinner, addressed the conference’s attendees and discussed the transformative roles of adversity and resiliency for those battling this disease. Using his computer generated voice he said, “We possess an eternal flame that will burn brightly until we see a cure for ALS realized.” The Ravens’ senior advisor to player development also shared his story at the opening of the 2013 National ALS Advocacy Day and Public Policy Conference.

“The fight against ALS has existed for over a hundred years with no cure,” says Brigance. “There is a need for greater awareness, along with funding for research and patient services. My encouragement will remind us of the root of resiliency, which permeates our cause. We will not stop until we find a cure.”

While there are many causes to support, Brigance feels ALS is often overlooked when compared to cancer and other more well-known afflictions.

Brigance recently visited the ALS Therapy Development Institute in Boston to tour their facilities and was “excited by the prospects on the horizon.” But a cure can’t be found fast enough in his eyes, he said. He is hoping funding and procedures can be fast-tracked.

“My hope is Congress will recognize the devastation of ALS and will champion our cause,” says Brigance. “There are countless researchers looking to unlock the mysteries of ALS. Unfortunately, people are dying in the prime of their lives because the answer isn’t coming quick enough.”

Kim Hanna, President and CEO of the ALS Association Florida Chapter, says, “Only through your efforts can we help to achieve O.J.’s and our vision – a world without ALS.”

To become an ALS Advocate so that you can lend your voice to help increase government funding for ALS research and advance policies that will impact everyone touched by this horrific disease please visit their website at ALS advocates are critical to ensuring that lawmakers understand the urgency of finding treatments and a cure for Lou Gehrig's Disease!

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