The Association is pleased to continue on the tradition of supporting bright, young scientists in ALS research through the Milton Safenowitz Postdoctoral Fellowship Program. This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. In this series, we highlight the dedication and unique contribution each fellow makes to ALS research. Today, we feature Dr. Sergey Stavisky from Stanford University
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 firstname.lastname@example.org. 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 email@example.com.
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!
In preparation for this week’s ALS Association Advocacy Fly-In in Washington D.C., we are giving a preview of our 2017 legislative priorities. Here we focus on the ALS Disability Insurance Access Act, which was introduced last week in the Senate and United States House of Representatives (S.379/H.R.1171). Its goal is to eliminate the five-month waiting period that people living with ALS must complete prior to receiving Social Security Disability Insurance (SSDI). The Association whole-heartedly supports this legislation and its goals and is acting aggressively to make this legislation into a reality.
ALS is characterized by the progressive loss of motor neurons – both upper motor neurons (UMNs) and lower motor neurons (LMNs). Within the ALS scientific community there has been a debate how UMNs and LMNs contribute to disease. Dr. Ozdinler and team from Northwestern University’s Feinberg School of Medicine in Chicago recently published a paper in Scientific Reports, a high impact journal published by Nature, further solidifying the important contribution of UMNs to disease specifically in people living with ALS. The ALS Association is pleased to support Dr. Ozdinler’s studies that contributed to this important paper.
In January, CEO and President Barb Newhouse hosted a Listening Tour with Association staff leaders, BOT Chairman Doug Butcher and Bill Thoet, former BOT Chairman and current Chairman of The Association’s Research Committee.
The ALS Association’s annual Leadership Conference earlier this month brought together leaders from all 39 chapters across the country in Irvine, Calif., to share ideas and collaborate. At this year’s conference, we were pleased to honor several heroes who are living with ALS and who have provided great inspiration to all those around them.
In the January 9th issue of Neurotherapeutics, Dr. Richard Smith, Director of the Center for Neurologic Study in La Jolla, Calif. published promising results of a phase II trial testing the effect of Nuedexta on bulbar function. Overall, he and his co-authors found that Nuedexta had a significant palliative effect on speech, swallowing and salivation in people living with ALS. The ALS Association contributed to the funding of this trial.
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.
During The ALS Association’s annual Leadership Conference in Irvine, Calif., The Association came together to honor the Barnett family, who have contributed over $11 million to The ALS Association since it was founded. Lawrence Barnett was the founding chairman of The Association. To solidify the family’s place in Association history, it was announced that the TREAT ALSTM drug development program will be named “The Lawrence and Isabel Barnett Drug Development Program.”
Over the last year and a half, The ALS Association has been working with authors from Association Chapters, ALS centers and clinics and other ALS organizations to rewrite the original Living with ALS manual series, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers and other healthcare professionals, as well as our chapter and national staff.