This week, former San Francisco 49ers receiver Dwight Clark announced he has ALS. He joins other NFL football greats including Steve Gleason, Tim Shaw, Kevin Turner, O.J. Brigance, and others, who have been diagnosed with ALS following their pro football careers. These announcements have brought much attention to the connection between football and traumatic brain injury (TBI) and the question of whether such injuries from football can lead to ALS or chronic traumatic encephalopathy (CTE). Here, we highlight some research behind the possible connection.
There is a need to continue to educate Members of Congress about ALS and its true impact on people living with ALS and their loved ones. This is where you and your voice come in. Advocates – people living with ALS, their families, friends, doctors and researchers – successfully sharing their stories with members of Congress will result in more legislative victories. Your personal story, delivered first hand, is one of the most powerful tools we have.
That is why The ALS Association invites you to join the entire ALS community as we unite in Washington, D.C. for the 2017 National ALS Advocacy Conference. This is our opportunity to share your ALS story and let Members of Congress know the true nature of the disease and why more must be done now.
The public policy priorities that The Association and the ALS community will be focused on this year include asking Member of Congress to 1) cosponsor the ALS Disability Insurance Access Act (S.379/HR.1171), 2) cosponsor legislation, soon to be introduced, to protect access to complex rehabilitation technology, and 3) appropriate $10 million each for both the National ALS Registry at the Centers for Disease Control and Prevention (CDC) and the ALS Research Program at the Department of Defense (DOD). For more information about the ALS Disability Insurance Access Act (S.379/HR.1171) click here.
This year’s conference will be held Sunday, May 14th – Tuesday, May 16th at the J.W. Marriott, in Washington, D.C. After a day and a half of meetings and training sessions, ALS Advocates from across the country will take to Capitol Hill for meetings with their legislators on Tuesday.
To attend the 2017 National ALS Advocacy Conference, please register online at www.ALSA.org/advocacy/advocacy-day. This website also provides information such as the hotel – the J.W. Marriott, travel information, a conference outline and other important information for participants.
Conference registration fees are waived for people with ALS and for one caregiver traveling with them to the conference.
For other participants, the 2017 conference has a $175 non-refundable registration fee for attendees who are affiliated with The ALS Association, an ALS Association Chapter or other affiliated organization. This fee covers a small portion of conference costs, including meals, transportation to Capitol Hill and briefing materials. Registration fees for children are $25. The fee for non-affiliate attendees is $350.
For the J.W. Marriott hotel, the single/double occupancy rate is $299 plus tax per night; $319 + tax for triple occupancy; $339 + tax for quadruple occupancy; with a maximum of four guests per room. Once you register for the conference, you will be provided with a direct link to the J.W. Marriott’s reservations website.
In order to request an ADA accessible hotel room, you must contact Michael Coscia at email@example.com. Your e-mail should include your hotel confirmation number. For all additional questions about hotel reservations or transportation, please contact Michael Coscia.
General questions about the 2017 ALS National Advocacy Conference can be sent to firstname.lastname@example.org.
The voices on the Hill during the Fly In were heard well, but were just a start. Let us join forces to make our voices louder by participating in the 2017 National ALS Advocacy Conference. We look forward to seeing you there and working together to champion these important priorities for the ALS community!
Rivals Honor former ODU Coach Jeff Capel, Jr., Recently Diagnosed with ALS
The men’s basketball coaching staffs of Duke University and the University of North Carolina are wearing ALS Association lapel pins tonight in honor of Jeff Capel, Jr., who was recently diagnosed with ALS. Capel was the head coach at Old Dominion University for seven seasons and also served as an assistant for the Charlotte Bobcats and the Philadelphia 76ers. His son, Jeff, is an assistant on Duke’s staff, and his son, Jason, played at UNC and now is an announcer on the ACC Network.
You may have heard that IBM’s supercomputer, Watson, competed on Jeopardy! and is now being used to solve everything from business problems to diagnosing cancer. Today, we were thrilled to hear the latest Watson news: Working with a team at the Barrow Neurological Institute in Phoenix, headed by Dr. Robert Bowser, Watson helped researchers discover 5 new ALS genes. The Barrow researchers are excited about Watson’s future potential for further neuroscience work, and so are we!
Watch IBM’s new video below, and read more about the announcement here.
Our friend Ted Harada passed away this week.
Many of you may have known him. Ted was first diagnosed with ALS in August 2010 and immediately became a tireless advocate, volunteer, and voice of the ALS community.
He had served on The ALS Association Board of Trustees and on the board of directors for the Georgia Chapter, devoting precious hours of his life to steering our Association in the right direction.
Deborah Silver, an accomplished vocalist and performer, has been active in the fight against ALS since 2009, when her sister was diagnosed with the disease.
My sister, Marjie Block, was diagnosed with ALS in 2009. I was by her side visiting doctor after doctor hoping to get any diagnosis other than ALS. We even prayed for Lyme Disease….anything but ALS! Ultimately, this unfortunate diagnosis stayed the same and Marjie’s courageous battle began.
As our family rallied behind her, we became determined to win this seemingly unwinnable ordeal and have committed ourselves to fighting alongside all ALS patients. My children have launched several projects to raise funds for a cure including my daughter’s website, hopeheARTbyMadison.com, so far raising over $100,000. Having always felt there is a reason for everything, perhaps this disease ended up in our family because we simply will not rest until ALS is eradicated. This is why I am always trying to come up with ideas of how to raise even more funds for a cure.
Throughout this process, I have met some of the most impressive and special people in the world who also happen to be battling ALS. My heart goes out to everyone and their families struggling with this horrendous disease.
Following up on our June 2016 blog post about edaravone, an intravenous drug therapy produced by Mitsubishi Tanabe Pharma Corporation, locally based in Jersey City, N.J., with a head office in Osaka, Japan, there has been recent news as to the status of the drug in the U.S.
At the end of August 2016, the U.S. Food and Drug Administration (FDA) accepted a New Drug Application (NDA) for edaravone, which has been used to treat stroke victims in Japan for the last twenty years. In a phase II clinical trial of edaravone, in a sub-group of people with ALS in Japan, researchers found a statistically significant improvement in the ALS Function Rating Scale-Revise. Edaravone works by getting rid of toxic by-products generated in cells, which is thought to protect against oxidative stress.
An “NDA” includes a comprehensive overview of a drug, including results and data analysis for the entire clinical development program and earlier preclinical testing, as well as the proposed labeling and manufacturing plans of the new drug.
This is extremely positive news for the ALS community, as acceptance of the NDA is the final stage of the development and approval process. Moreover, this is the first time that the FDA has ever accepted an NDA without first requiring an Investigational New Drug Application (IND), something that would have delayed the delivery of edaravone by many years. We appreciate the FDA for taking this step to help speed the approval of a potential ALS therapy. If approved, edaravone would be commercialized under the brand name Radicava™
While the company requested “priority review” for edaravone, which would have meant a six-month review time, the FDA accepted the application with a standard ten-month review. This means that a decision on the application is expected by June, 2017 based on timelines set by the Prescription Drug User Fee Act. This does not mean that the review will take the full ten months or preclude the FDA from acting sooner. We have been in contact with our colleagues at the FDA to reiterate the urgent need to move forward as quickly as possible.
The ALS Association joins the ALS community in urging a timely review of edaravone so that, if approved, it becomes available to people living with ALS as soon as possible. Every day makes a difference to people and their families fighting this disease. This truly is an exciting development for the ALS community, as it’s only the third potential ALS drug in history to advance this far in the drug development process (Riluzole and Myotrophin were the first two).