In 2016, a significant number of ALS research discoveries, advances in clinical trials, collaborations and strategic initiatives all accelerated the pace of discovery in finding treatments and a cure for ALS. We’ve pulled together what we think are 10 of 2016’s biggest advances in ALS research that gave us, and people living with ALS,…
I am asking every ALS patient, as well as their caretakers and loved ones, to speak up for our community this Tuesday. Barbara Newhouse and members of the National Board of Trustees are holding a live virtual listening event to allow us to voice our needs, thoughts and suggestions. It is scheduled for THIS TUESDAY, June 21st, 1pm ET or 10am PT. We’ve all been asking for this, and now we have been given the opportunity. Let’s make it count!!! Since it is a WebEx event, it is my assumption we will be able to provide our comments by either typing or verbally. It is two hours in duration, and you must register to attend. We are requested to REGISTER BY TOMORROW, Monday, June 20th. I’ve never seen such a long hyperlink, but here is where you register:
Global ALS Awareness Day is Tuesday, June 21, and we’re commemorating the special day with a virtual listening tour event! People living with ALS and their caregivers are invited to join ALS Association CEO, Barbara Newhouse, and members of the National Board of Trustees from 1-3 PM EDT to express their thoughts and ideas that will help advance our quest to treat ALS once and for all! Your participation is greatly appreciated.
Free Registration is Required for All Informational Webinars
The Center for Medicare Advocacy, Inc., established in 1986, is a national nonprofit, nonpartisan organization that provides education, advocacy and legal assistance to help older people and people with disabilities obtain fair access to Medicare and necessary health care. The Center is headquartered in Connecticut and Washington, DC with offices throughout the country.
ALS patients desperately need the ALS Association to ACT IMMEDIATELY to address and correct home care issues. There is miscommunication, as well as a knowledge deficit, of the home health services options available through insurance programs, including Medicare. There is also a great disparity between...
You may ask, “Why do the Ice Bucket Challenge again?” And we understand. It’s easy to see it as a one-time event. But let’s make it more than that. Let’s make it into a movement. Even though we've raised $220 million worldwide, a new ALS treatment can cost up to $2 billion, while the costs of ALS patient care can be over $250,000 out-of-pocket per year, above and beyond what insurance covers. So grab a bucket and a camera and join us. Be creative or keep it simple. Whatever you do, please make a donation to an ALS charity and remember to have fun! We officially challenge YOU to take the ALS Ice Bucket Challenge, this August and #everyAugustuntilacure.
- ALS Ice Bucket Challenge Co-founders Pat Quinn, Pete Frates
After you participated in the #ALSicebucketchallenge, did you start to wonder more about the disease and how you can continue to be a part of the worldwide movement to find the cure? Check out this infographic to learn more, and share it with the friends you asked to #challengeALS with you last summer!
The ALS Association encourages scientific research to find a cure for ALS, heightens awareness of the nature of the disease, stimulates volunteerism and activism, and increases awareness of government leaders to encourage support of research and patient care.
An ALS patient Robin Mower and her husband thank those people that have participated in the ALS Ice Bucket Challenge and/or have donated to the ALS Association
Since the end of July, the money has been sloshing in at a rate of about $9 million a week. Last year, from July 29 to Aug. 26, the group raised just $2.6 million.
The ALS Association encourages scientific research to find a cure for ALS, heightens awareness of the nature of the disease, stimulates volunteerism and activism, and increases awareness of government leaders to encourage support of research and patient care.
May is ALS Awareness Month. To do our part in amplifying the mission of the ALS Association, we are giving away TWOALS Association BowTies to those individuals who help us spread the word the most! The ALS BowTie design represents hope, with the notion that there is light at the end of the tunnel.
A PSA campaign developed by Red Deluxe Brand Development for the national ALS Association has its first pickup: the April 21 issue of TIME magazine. The new campaign recognizes 2014 as the 75-year anniversary of Lou Gehrig’s retirement from baseball due to ALS, and it calls attention to the ongoing fight against the disease that is often called simply “Lou Gehrig’s Disease.”
The national campaign remembers Gehrig’s emotional farewell speech in 1939 when he declared himself the “luckiest man on the face of the earth.”
In additional to PSA placements in.................
This Sunday David McNeicewill be running the Chicago Marathon for the ALS ASSOCIATION and for many pALS in the continued fight and in Memory of those that have lost their courageous fight. David is checked in and ready to hit the road for ALS tomorrow!
We are truly grateful and honored that David has included Michael Lopez Jr. in his mission and dedication. Thank You David from the Lopez Family for all you do for ALS and finding a Cure for ALS. Michael will be right along with you and cheering you on from above.
David is running in Memoryof his own Courageous Mother that lost her battle with ALS as well at those that continue to inspire Davids Dedication in finding a cure for ALS:
Michael Lopez Jr.
Carey Hinkley
John Keator
Mary Lupo Ciotto
Doug Tremlett
Paul Dowd
Bob O'Neil
We must find a cure!!! Join the search:
Please consider making a donation to David's Chicago Marathon/ ALS Association-
ALSA SURVEY NOW OPEN TO EVERYONE IN ALS COMMUNITY - The ALS Association Care Services Survey is now available. Every member of the ALS community is urged to participate and provide their input to help prioritize our needs. The results will be shared with us at some point in the near future.
The deadline to provide your feedback is Thursday, July 14th.
Today, The ALS Association joins the Pharmaceutical Research and Manufacturers of America (PhRMA) in releasing a new report, “Medicines in Development for Rare Diseases,” which finds that America’s biopharmaceutical research companies are currently developing more than 560 medicines for patients with rare diseases, including amyotrophic lateral sclerosis (ALS).
Register for one of the three webinars being held over the next few weeks to learn how to access your Medicare home care benefits (aka home health services).
As a result of our successful petition and advocacy efforts, the ALS Association has partnered with the Center for Medicare Advocacy to create and host educational webinars. The first one is scheduled to be held this Thursday, and you must register in advance to participate. I have provided the email I received from the ALS Association today, which contains the details. Please spread the word!!! Let's get the ALS community the information and resources needed to access their Medicare home care benefits already in place...
ALS Association email:
Are you eligible for Medicare Home Health Benefits? Do you have questions about Medicare Home Health Benefits? Are you having problems accessing Medicare Home Health Benefits? If you answered “yes” to any of these questions, you will find these webinars very valuable!
The ALS Association is working with the Center for Medicare Advocacy (CMA) to better help people living with ALS navigate the complexities of Medicare home health benefits. As part of this collaboration, the CMA will be presenting a webinar that will discuss topics including: an overview of the Medicare program with particular focus on the home health benefit, Medicare eligibility and enrollment, and Medicare payment rules and assistance.
This webinar will be presented on three separate dates with a 30 minute live Q&A following each session. For more information and to register for a session, click the links below.
Learn how you can help The ALS Association advance scientific research to find a cure for ALS, provide resources for people with ALS and their loved ones, heighten awareness of the nature of the disease, and encourage government leaders to expand their support of research and patient care.
The Steve Gleason Act: The House Ways and Means Committee unanimously passed the Steve Gleason Act (H.R. 1919) on Tuesday, June 2. The legislation would help ensure access to SGDs and eye tracking technology and allow people to keep their SGD if they are admitted to hospice, a hospital or nursing facility. The Energy and........
The ALS Association encourages scientific research to find a cure for ALS, heightens awareness of the nature of the disease, stimulates volunteerism and activism, and increases awareness of government leaders to encourage support of research and patient care.
The ALS Association is tremendously grateful for the $115 million received this summer. Ice Bucket enthusiasm continues to translate into local support in communities nationwide. The Association is seeing significantly increased participation in its fall Walk to Defeat ALS® events and other activities.
Given this summer’s unprecedented awareness around ALS, most of The Association’s chapters in both large and small markets, have seen a 30 to 100 percent increase in registrations for their Walks.
The ALS Association Western Pennsylvania Chapter, for example, saw a substantial increase in the total number of walk participants at its most recent even in Pittsburgh: 1,977 participants in 2013 compared to 3,277 people in 2014.
“This is an encouraging sign that people have truly embraced the fight against ALS as a cause they want to support,” said Barbara Newhouse, President and CEO. “We are truly thankful for the public’s continued support of the fight to find treatments and a cure for the disease.”
The Association is actively involved in meeting with key stakeholder groups to provide input into a plan to spend the $115 million in Ice Bucket Challenge donations wisely. The plan, which will be heavily focused on driving ALS research forward, will be voted on by the National Board of Trustees in mid-October.
On Friday, Sept. 19, Barbara Newhouse, President and CEO of THE ALS Association, met with a panel of advisors of people living with ALS. Out of respect for their privacy, health and well-being, The Association has left the decision of sharing their participation directly with these individuals.
“We look forward to continue communicating with all our donors and the public about how this incredible support will fuel the fight against this disease,” continued Newhouse.
The ALS Association encourages scientific research to find a cure for ALS, heightens awareness of the nature of the disease, stimulates volunteerism and activism, and increases awareness of government leaders to encourage support of research and patient care.
There is still no cure for ALS, but at tonight’s Phillies Phestival, a major milestone was reached in the fight to defeat this devastating, always-fatal,
Leonard Petrucelli, chair of the department of Neuroscience at the Mayo Clinic in Jacksonville, has received a 2013 Amyotrophic Lateral Sclerosis Research Program’s investigator-initiated award, which focuses on the discovery and validation of ALS biomarkers.
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and no life-prolonging treatments for the disease.
The Amyotrophic Lateral Sclerosis Research Program is a............
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