National Stroke Association Letter to Congress on Health Care Reform

She missed an incredible opportunity to push for a National Stroke Plan, similar to the National Alzheimers Plan. No mention of what it would take to solve all the fucking problems in stroke. Robyn Moore is obviously just a caretaker Stroke president. NO initiatives, NO innovation, NO leadership, just tweak the status quo. If this isn't enough to get her or the board of directors to contact me I don't know what is.
http://www.prnewswire.com/news-releases/national-stroke-association-letter-to-congress-on-health-care-reform-300392975.html

Researchers estimate $40 billion in annual costs to care for elderly stroke survivor

The National Stroke Plan similar to the National Alzheimers Plan  should address this need.  You could reduce that expense to zero with EXACT 100% RECOVERY PROTOCOLS! Are you too blitheringly stupid to understand?

Researchers estimate $40 billion in annual costs to care for elderly stroke survivor  

It's assumed that family and friends will help out in the event of a medical crisis, but that's not always feasible. And when stroke survivors need more than 20 hours of care per week, as a study in the August edition of Stroke shows, it's a large burden for their loved ones.
More than half of elderly stroke survivors receive help from a caregiver, requiring 22.3 hours of assistance per week on average. That's nearly double what elderly patients who have not had a stroke require, at an average of 11.8 hours of help.
A group of University of Michigan researchers found the need for care translates to about $11,000 per stroke survivor per week, for an annual estimate of around $40 billion in costs to care for elderly stroke survivors.
"Previous studies underestimated the caregiving resources that are used, and we expect the cost of caregiving will only increase as baby boomers age," said first author Lesli Skolarus, M.D., M.S., a neurologist with the U-M Comprehensive Stroke Center.

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Caregivers could include unpaid, like family and friends, along with paid caregivers, as about one-third of stroke survivors with informal care also receive paid care. Activities included in the estimate are accompanying the patient to physician appointments, cooking, cleaning, helping the patient eat, bathe and dress and helping with money matters and insurance decisions.
Using data from a national survey of Medicare beneficiaries, the team compared 892 elderly self-reported stroke survivors to 892 non-stroke controls, accounting for demographics and other health conditions, like hypertension, coronary heart disease or dementia.
The researchers determined more than half of elderly stroke survivors receive help from a caregiver, requiring 22.3 hours of assistance per week on average. That's nearly double what elderly patients who have not had a stroke require, at an average of 11.8 hours of help.
"Stroke survivors need a caregiver to spend the equivalent of half of a full-time job each week to help them," said senior author James Burke, M.D., M.S., a neurologist with U-M's Comprehensive Stroke Center and the Ann Arbor Department of Veterans Affairs. "Caregiving is an especially big burden in patients with neurological conditions."
Skolarus added, "We need to plan for other mechanisms to support caregivers and survivors. Hopefully planning now will reduce the future burden."

Source:

University of Michigan Health System

Help Provide a Lifetime of Better Treatments - NSA email

Totally the wrong focus. You do one thing. Get a National Stroke Plan out there that can be updated as needs change and you wouldn't have these piecemeal requests to contact your legislator. Just copy the National Alzheimer Plan and change a few words.
Is there anyone in the National Stroke Association that has ANY clue what needs to be done for stroke solutions? Or do they have their heads so far up their asses they can't see anything but prevention, F.A.S.T. and awareness?  But they are great at Denying the problems in stroke.

Help Provide a Lifetime of Better Treatments - NSA email
 

Dear dean,

Act Now

Help improve access to and the effectiveness of treatments for stroke survivors, by taking a few minutes TODAY to let your members of Congress know how important this is to you. In the next few weeks, legislators will be considering funding for four critical programs:

1. Medical research at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) that can lead to significant advancements in stroke diagnosis, treatment and recovery.
2. Brain Research through Advancing Innovative Neurotechnologies (BRAIN), a collaborative, cross-department program seeking to map the brain in an effort to better understand the fundamental causes of conditions like stroke.
3. Precision Medicine Initiative, which looks to prevent and treat diseases by studying a person’s genes, environment, and lifestyle. This bipartisan effort is of particular interest to survivors because it could lead to a more personalized, patient-focused approach to preventing and treating stroke.
4. A new neurological disorder tracking program that will provide ongoing access to research and information about the incidence and prevalence of stroke.

We ask that you contact your Members of Congress today and urge them to support appropriate funding for these programs.The few minutes it takes for you to contact your members of Congress will have a lasting impact. We’ve provided everything you need, including a draft letter for you to personalize. Join the rest of the stroke community in asking Congress to support a better understanding of stroke, its causes, and potential groundbreaking treatments.

Take Action

Thank you,

Mitchell Ronningen
Manager, Government Policy

9707 E. Easter Lane · Suite B Centennial, CO 80112 1-800-STROKES (787-6537)

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National Stroke Association - Where the money goes

This in a nutshell points out the whole problem with our stroke associations. Awareness NOT finding solutions to all the problems in stroke. This is so simple to solve;
1. Create and follow a stroke strategy to solve stroke problems. BHAGs (Big Hairy Audacious Goals)  Like repeatable neuroplasticity, repeatable neurogenesis, fatigue, spasticity, aphasia. And since we have no National Stroke Plan or strategy nothing will get done in stroke from the NSA that actually helps survivors.
2. Put out RFPs(Request for Proposals) to researchers to solve those problems.
3. Apply for grant money to fund those research projects.
4. Broadcast the success stories to generate enthusiasm and more foundations that want to get on a successful stroke strategy train. Hit the tipping point for stroke so each stroke success is met with breathless anticipation and media stories.
http://www.stroke.org/

Where the Money Goes

Total Expenses: $3,339,663

• Administrative: $313,110 - 9%
• Fundraising: $515,266 - 15%
• Stroke Education: $2,511,287 - 74%

ALZHEIMER’S ASSOCIATION AWARDS $4.3 MILLION TO ACCELERATE THE LAUNCH OF NEW DRUG TREATMENT ARMS IN LANDMARK PREVENTION TRIAL

If we had anything even remotely close to a great stroke association they would be getting foundation grants to solve one of the BHAGs (Big Hairy Audacious Goals)  Like repeatable neuroplasticity, repeatable neurogenesis, fatigue, spasticity, aphasia. And since we have no National Stroke Plan or strategy nothing will get done in stroke that actually helps survivors.
http://www.alz.org/documents_custom/dia-tu_nextgen_release_042316.pdf?
The Alzheimer's Association announces a new $4.3 million research grant for a new phase of the Dominantly Inherited Alzheimer's Network Trials Unit (DIAN-TU) known as DIAN-TU Next Generation (NexGen). This award will accelerate the testing of new potential Alzheimer’s therapies and a new diagnostic approach in people with genetically based, younger-onset Alzheimer's disease using an innovative trial design that is being applied to Alzheimer’s for the first time. DIAN-TU is a landmark, global Alzheimer's prevention study led by researchers at Washington University in St. Louis.
DIAN-TU NexGen will add the infrastructure for new testing methods and additional drug arms designed to test experimental treatments targeting the accumulation of amyloid brain plaques, a hallmark of Alzheimer's. Amyloid plaques are deposits of the protein fragment amyloid-beta that build up in the spaces between nerve cells and are a hallmark brain change in Alzheimer's.
“This funding will quicken efforts to launch and expand the DIAN-TU NexGen trial, creating the foundation for a new generation of clinical trials. DIAN-TU NexGen will accelerate both the testing of potential therapies and allow for the consideration and execution of combination therapy, which has the potential to make a real impact on those with the disease,” said Maria Carrillo, Ph.D., Alzheimer’s Association Chief Science Officer. “Having a treatment that can delay the onset of Alzheimer's is projected to reduce the number of individuals affected by the disease by 2.5 million within the first five years it is available.”
Making this Award Possible
The Alzheimer’s Association funding for DIAN-TU NexGen is made possible by donations to the Alzheimer’s Association from St. Louis-based financial services firm Edward Jones and Alzheimer’s Association Zenith Society members John and Crystal Beuerlein, of St. Louis, and Mary Barton Smith, of Portola Valley, California. John Beuerlein is General Partner at Edward Jones. The Zenith Society is a group of individuals and organizations that have each committed $1 million or more to the Alzheimer’s Association to support research.

Take Action on the SYNC Act! - Stroke Advocacy Network

Wow, just wow, What a small bore action. Pure laziness, Must be too hard to take on a big challenge, Like solving neuroplasticity or neurogenesis or fatigue or spasticity or aphasia or creating a National Stroke Plan. There are plenty of BHAGs(Big Hairy Audacious Goals) out there.  But what the hell, this organization is not run for survivors anyway.
http://support.stroke.org/site/R?i=ikWwR77-6Bg0J-ystwd1sA 
Dear SAN member,
We need your help. Recently, legislators in the House introduced the SYNC Act. The SYNC Act would expand research and testing of care models that will improve medication adherence. One of these models is prescription synchronization. Prescription synchronization allows patients with chronic conditions, such as stroke, to have multiple medications refilled at the same time.
The SYNC Act would greatly benefit patients who take multiple medications by making it easier and less time consuming to get refills. It also would help the caregivers, family members, and loved ones whom stroke survivors rely on for care and support.
Can you take five minutes to make a difference for stroke survivors and their families? Ask your members of Congress to support the SYNC Act. We have already provided everything you need, including a draft letter you can personalize. Just put in your address so we know which members of Congress your letter should go to and that’s it! Add your voice to the conversation to help ensure this important legislation gets passed.

Thank you,

Mitchell Ronningen, J.D.
Manager, Government Affairs

9707 E. Easter Lane · Suite B Centennial, CO 80112 1-800-STROKES (787-6537)

Come Back Strong - National Stroke Association idea for stroke motto/color

More unimportant crap from the NSA. So rather than solving any of the problems in stroke you are trying to bamboozle us into thinking this is progress.Stop trying to assuage your guilt by doing useless things. How about creating a NATIONAL STROKE PLAN?
Someday you'll talk to me directly and you won't be happy about it.
http://www.comebackstrong.org/

Ask Legislators to Co-sponsor FAST Act - National Stroke Association

Once again the NSA is going for the little steps rather than the big one. Creating a National Stroke Plan similar to the National Alzheimers Plan. Then all we have to do is follow the plan and solve the problems in the plan. None of this year by year lobbying. My God, have we got people with not even two neurons to rub together and create a spark of intelligence. Proving once again that we don't have a great stroke association
http://support.stroke.org/site/R?i=yqIFbl9m6nCNNzfkDzNYmQ

Dear dean,

Stroke issues continue to be at the top of the agenda in Washington, DC, and your voice is needed more than ever!

In May, Senator Kirk (IL), a stroke survivor himself, introduced the Furthering Access to Stroke Telemedicine (FAST) Act in the U.S. Senate. This bill requires Medicare to cover telestroke services regardless of location, ultimately making it easier for patients to connect with specialists. Congressman Griffith (VA-09) introduced similar legislation in the U.S. House of Representatives with Congresswoman Beatty (OH-03), another stroke survivor.

Telestroke technology can connect patients having a stroke with stroke specialists around the country who can provide quicker, more accurate diagnoses. Speed is critical when assessing and treating a stroke—the  faster a patient receives treatment, the better the chance of survival and minimizing long-term disability. Unfortunately, access to these telestroke services are limited, as Medicare covers telestroke services only if they are provided in a rural hospital. With this legislation, we can change this for the better.

Together, we can make a difference. Add your voice to ours and take action today!

Sincerely,

Angie Baker
Manager, Policy Advocacy

Virtual Lobby Days event came to end. We’re happy to report that it was remarkably successful! - NSA

There is absolutely no way this was successful. They aren't even tackling the right problem. These minor individual initiatives are stupid. You need to have our legislators create a National Stroke Plan similar to the National Alzheimers Plan. Then all we have to do is follow the plan and solve the problems in the plan. None of this year by year lobbying. My God, have we got people with not even two neurons to rub together and create a spark of intelligence.
http://support.stroke.org/site/R?i=erTY-80lnGMPkEbgXMaG3g
It is appalling that the NSA doesn't even have any strategy to help stroke survivors. You can contact the president of the NSA (Matt Lopez) directly via mlopez@stroke.org and ask when a National Stroke Plan will be delivered to Congress for voting.

Sen. Kirk launches 'Battle Buddies' to help people with disabilities

If Senator Kirk really wants to help stroke survivors, future and current, he would be pushing for a National Stroke Plan, similar to the  National Alzheimer’s Project Act (Public Law 111-375)
If you are one of his constituents push that idea to him.
http://chicago.suntimes.com/chicago-politics/7/71/387100/mark-kirk-battle-buddies-support-group

Ask Legislators to Make Stroke a Priority Today - NSA email

This is the wrong approach. It is thinking too damned small.  The much better approach would be to get a National Stroke Plan out there. That would allow for creating a strategy to address all the problems in stroke rather than this scattershot approach. If we don't know what the hell problem we are trying to solve we will never get there. The Stroke Plan could easily be modeled after the National Alzheimers Plan. Repealing therapy caps will not solve the problem that only 10% get to full recovery. To help the most patients you are going to have to stop the neuronal cascade of death. It is appalling that the NSA doesn't even have any strategy to help stroke survivors. You can contact the president of the NSA (Matt Lopez) directly via mlopez@stroke.org and ask when a National Stroke Plan will be delivered to Congress for voting.

View this message on our website.

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Dear Friend,
The 114^th Congress gaveled into session on January 6, 2015. The first few weeks of Congress are spent organizing the committees and setting the legislative agenda for the following months. During this early planning period, it is vital that we remind Congress of the challenges stroke survivors face and the legislative remedies that address these challenges.
In the short term, the Medicare therapy caps will be an important priority for the stroke community. There is a process that allows patients to receive outpatient services beyond the caps, but it is set to expire on March 31, 2015. Now is the time for Congress to repeal the therapy caps and allow stroke survivors to receive the medically required amount of outpatient therapy they need.
In the long term, several bills will be introduced soon to provide relief to stroke survivors and their loved ones. The coming legislation will create a tax credit for caregiving expenses, promote return to work practices, and increase access to stroke treatment centers through telemedicine. Please ask you members to co-sponsor the legislation as the bills are introduced in both chambers.
We’ve provided everything you’ll need to contact your members of Congress, including a draft letter for you to personalize. Reaching out to your legislators will take only a moment and will ensure the stroke community’s priorities are at the top of the 114^th Congress’ agenda.
Sincerely,

Angie Baker
Manager, Policy Advocacy

Medicare Therapy Caps Sponsor Numbers Surpass Goal

I know this is good work but overall this is the wrong place to focus efforts. The effort should be on creating a National Stroke Plan similar to the National Alzheimers Plan. That way we actually will have created a strategy to follow and can tackle all of the problems in stroke.  This effort is just part of the godamned lazy press release notices that never get at the real work needed in stroke. Until they get a survivor in there to actually kick some butt and fire people will stroke associations actually work for the best needs of survivors.
http://www.stroke.org/newsletter/stroke-advocacy-network-enews-november-2014#article1
The Stroke Advocacy Network (SAN) has worked diligently to push legislation in the House (H.R. 713) and the Senate (S.367) that would permanently repeal the $1,920 cap on occupational and $1,920 for speech and physical therapy services for Medicare recipients. This fall, SAN joined a larger campaign in an effort to secure a bipartisan majority of legislators co-sponsoring the repeal, which would put pressure on Congressional leadership to hold a vote on the bills. The target number of co-sponsors for the repeal was 218 Representatives in the House and 51 Senators in the Senate. Fortunately, SAN and coalition partners surpassed the goal for the House bill with 222 co-sponsors. Although we have not yet achieved a full repeal, this is a major milestone in SAN’s advocacy efforts and we would like to thank everyone who participated in the campaign.
What does this mean for the future?  While this is just one step on the journey toward making the caps a thing of the past, it’s an important step.  For the last 17 years, stroke survivors on Medicare who have reached the caps have had to manage their care on a piecemeal basis, through a difficult exceptions process. While Congress has extended the exceptions process annually, with the current exception expiring on March 31, 2015, this is not enough. When the new Congressional session starts in January, your job as a member of the Stroke Advocacy Network will be to help returning and new members of Congress.

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