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Join Us: NYS Stroke Advocacy Day

 

Stroke. Preventable. Treatable. Beatable.

Join us in Albany on May 27th as we talk to lawmakers about treating and beating stroke.

No experience?  No worries.  We'll make it easy for you.

We will kick off the day with a morning training session.  And we will set up legislative meetings for all participants.

Speak up for stroke victims.  To join us in Albany, simply register here:

https://www.surveymonkey.com/s/T6GGPZX

 

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You're the Cure Hero: Bob Biggins

What brought you to be an advocate for the American Heart Association?

I had my stroke in 2003 while serving in the Illinois legislature. I'd already been working with the American Heart Association on health care issues so after I was able, I became a visible advocate for heart healthy issues.

What issues or policies are you most passionate about and why?

Now retired, I continue to address heart healthy matters as I serve on a study group established by the legislature to continue work begun for stroke survivors. Our work product is shared nationally with the neediest populations affected by stroke.

What is your favorite advocacy memory or experience so far and what made it great?

I work with a stroke advocacy group called SSEEO. We've initiated a new survivor- to- survivor program that has been received very positively by both providers and recipients.

What is your favorite way to be active?

I exercise at my local health facility three times a week but also keep physically busy with eight of our grandchildren living in the same house.

What is your favorite fruit or vegetable?

Banana fresh off the tree!

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Update: Relief for stroke survivors

I have mixed news to share about our efforts to repeal Medicare’s caps on outpatient therapy services. Late Tuesday night, the U.S. Senate passed a bill that we hoped would include Senators Cardin’s and Vitter’s bipartisan amendment to permanently repeal the therapy caps. Unfortunately, the amendment fell a few votes short of the 60 votes needed to pass.

The good news, however, is that included in the bill is an “exceptions” process that allows patients to continue to be able to access therapy services over and above Medicare’s limits for the next two years. The President is expected to sign the bill in the next couple days.

Even though the bill does not repeal the therapy caps, a bipartisan majority in the U.S. Senate is now on record in support of the repeal for the first time ever! Moreover, a two-year reprieve is great news for stroke survivors. We could not have achieved this without the hard work of each of you and we should be proud of this accomplishment. And we will continue to fight to repeal the caps once and for all.

Thank you for the actions you take to ensure the priorities of heart and stroke patients are kept in front of our nation’s decision-makers.

You make a difference.

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Thank You for Everything You Do!

It’s National Volunteer Appreciation Week this week (April 12 – 16) – and with that thought on our minds, we wanted to tell you how much we appreciate you, and all that you do for You’re the Cure initiatives all across the East Coast.

We appreciate every single alert response, every call, every visit you have made to your lawmakers and elected officials. We appreciate you joining us in conference rooms across our division as we train you on different state policies and how to be an engaged advocate. We appreciate those who serve on our Advocacy Committees, putting in long hours in meetings and on calls as you help us shape our grassroots plans.

We appreciate you, and we appreciate your time and all you do as a partner of the American Heart Association. In case you ever forget, every little thing – both large and small – makes a difference!

Every Little Thing you do

as a You’re the Cure advocate helps,

and we appreciate you!

 THANK YOU for all you do.

Just a note: If you haven't joined our advocacy network yet, it's never too late! Just visit us at www.yourethecure.org and become a You're the Cure member. It only takes a few moments to sign up, but you'll help make a difference that will last through the years!

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Nevada Lobby Day 2015 Recap

On Tuesday, March 31st, American Heart Association staff, business leaders, survivors, and You’re the Cure advocates joined together in Carson City at the Capitol to support heart-healthy legislation.  In addition, dozens of advocates supported their efforts by taking action online.

To those of you who joined us in Carson City or took online action, the Nevada Advocacy Team wants to say THANK YOU!  

In case you didn’t attend Lobby Day, here’s how we did it:  

  • We hosted a Hand-Only CPR demonstration in the morning.  If you don’t know Hand-Only CPR or would like a 2 minute refresher, please click here!
  • We met face-to-face with legislators in the Assembly Education, Assembly Health and Humans Services Committees as well as members of the Senate Finance Committee.
  • We dropped off informational packets to all remaining legislators who were unavailable to meet due to previous engagements.

And if you missed this year’s Lobby Day, don’t worry! You can still support our efforts online by clicking here and there will be additional opportunities to take action in the coming months. We’ll need every single one of you along the way! 

Please email Ben Schmauss at Ben.Schmauss@heart.org or Josh Brown at Josh.Brown@heart.org if you are interested in future volunteer opportunities, or if you have any additional questions. 

Thank you again for being a critical part of the You’re the Cure team!

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Thank You for Supporting House Bill 2605 - Stroke Systems of Care Legislation

Thanks to your consistent and tremendous support over the last few weeks, House Bill 2605 was signed into law by Governor Ducey on March 31st!  You’re the Cure Advocates accounted for over 400 online actions and countless offline actions to persuade Arizona’s lawmakers to pass HB 2605 this session.  HB 2605 will protect all of Arizona’s citizens by establishing a statewide comprehensive, coordinated system of care that can save lives by providing seamless transitions from one stage of stroke care to the next. 

In Arizona, stroke is the 5th leading cause of death and accounts for over 45 hospitalizations a day. Many hospitals do not have the necessary personnel, equipment, and systems to effectively and rapidly treat stroke patients. HB 2605 will improve stroke care in numerous ways including: improved infrastructure, improved clinical tools and resources, improved patient education resources, increased access to the most up-to-date research, and require regular performance reporting for continuous quality improvement. 

Simply put, HB 2605 will encourage hospitals to adhere to the latest scientific treatment guidelines which will dramatically improve patient outcomes.

For more information on the details of comprehensive stroke systems of care, please visit here.

Thank you once again for your support. You are the cure!

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Advocate Spotlight: Kathy McCormick

When I woke up at 6:30 AM on October 22, 2013 I knew something was terribly wrong. I tried to get out of bed and found it difficult to walk. I called for my husband, who had just returned from the gym, he found me slumped on the bed and with the slurred voice I said, "I think I'm having a stroke."  I convinced him to not call for an ambulance,   - I didn't want the fanfare- instead, I asked him to drive me to the hospital. Not a smart move!

My ride to the hospital was very difficult because my equilibrium was off and with every turn and bump in the road I began to feel more nauseous and it also seemed to take forever to get to the hospital.  Once in the hospital I was told I had a mild stroke due to the long-term effects of hypertension.  I knew I had high blood pressure - and I was even on medication for it. My doctor had even increased my dosage a few months earlier, but a small vessel in the base of my brain, called the Pons area, ruptured and a piece of plaque was released.

After three days in the hospital I was sent home with strict instructions: change my diet, take a daily reading of my blood pressure, get plenty of sleep and begin physical therapy. Now the hard work would really begin.

For the next several months my life took on a new normal for me. Friends brought food, family members took turns coming to help care for me and strenuous physical therapy sessions helped to awaken my muscles. I had to learn to do many things all over again. I struggled with walking, speaking, reading, and even writing legibly.  I had to also re-learn how to swallow liquids and learn to drive a car again.

Once I was able to return to my gym I used a personal trainer to help me continue working on my strength, balance and coordination.  Today, I feel healthier than I did before my stroke.  I am working each day to continue my improvement both physically and mentally.

I used to think strokes happened only to older people; however, I now know that's not true. They can happen to anyone at any age. I have learned so much from the American Heart/Stroke Association and will continue to pledge my support for them and I am willing to lend support to fellow stroke survivors.

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You're the Cure at the Capitol: A Sea of Red Arrives at the State House

On March 30 and 31, over 60 You’re the Cure advocates from across North Carolina met at the American Heart Association’s office for our annual State Lobby Day.  Advocates participated in advocacy training on Monday. We reviewed the AHA state lobby day issues, learned the components of an effective meeting with a lawmaker and had time to meet in our lobby day meeting groups. 

Yolanda Dickerson and Frank Amend, present and past chair of the NC Advocacy Coordinating Committee respectively, along with Ilana Adlee, You’re the Cure youth advocated, discussed how they prepare for legislative meetings and what to expect from a meeting with a lawmaker. Everyone left with an understanding of what to expect at the legislature on Tuesday.

Resembling a sea of red, we arrived on Tuesday at the Capitol and enjoyed conversations with many Representatives, Senators, and their legislative aides as advocates urged their lawmakers to support:

  • HB 250/SB 298: Healthy Food Small Retailer/Healthy Corner Store Act
  • SB 662: Appropriate Funds for Tobacco Use Prevention
  • A NC Plan to Close the Coverage Gap

At mid-day, Matt Newman and our You’re the Cure youth advocates lead their fellow advocates, lawmakers and legislative staff in a walk around Halifax Mall to help raise awareness about National Walking Day, April 1.  By day’s end, we heard attendees comment that it had been a great day filled with positive experiences. 

A special thank you to the NC Advocacy Coordinating Committee for their help in planning and executing this signature advocacy event.  Finally, a big thank you to all the advocates that joined us for this year’s lobby day!

It’s not too late to make a difference by taking action as part of our virtual lobby day, just click here.

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Update on Stroke Therapy Caps

In the last few months, You’re the Cure advocates have spoken loud and clear. Together, we have sent 9,700 messages to Congress urging them to repeal harmful caps on Medicare therapy once-and-for-all.

Much has happened in the last couple weeks, so I wanted to give you an update and let you know that your voice is still needed!

Just recently, the House of Representatives passed a bill that extends the Medicare therapy caps exceptions process for the next two years. If this provision makes it to the President’s desk, Medicare beneficiaries who experience a stroke or other conditions requiring outpatient therapy could rest assured knowing that they would have access to the crucial rehabilitation needed to help in their recovery for two more years.

However, Congress can and should do better. Although temporary relief is better than none at all, we need to keep up the fight for a full repeal!

The bill now moves to the Senate. We are hoping the Senate will amend the bill to repeal the therapy caps once-and-for-all. But we need your help. In order to rally support for this amendment, Senators need to hear from you!

Will you contact your Senators and ask them to support a full repeal of Medicare therapy caps?

 

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If You Build It, They Will Come: Relationships with Lawmakers

There’s a saying often used when referencing the act of sales which can also be applied to advocacy: It all comes down to relationships.

As an advocate, building relationships with elected officials is the number one way you can ensure that lawmakers across your state are educated on the issues most important to you. You’re the Cure advocates are given opportunities to strengthen their skills at building relationships with decision makers through the various advocacy activities offered while promoting AHA’s policy goals.

One key to building relationships with legislators is to understand their preferred method of receiving information. What are the best ways to reach out to them, communicate with them, and follow up with them? Sometimes, the timing of communication can be one of the more important variables. VA Delegate Christopher Peace [R – New Kent] suggests that getting in touch with him at his local office is best: "Usually, setting a meeting in my Mechanicsville District Office prior to session sets a more relaxed environment in which a citizen advocate may express to me their thoughts on issues of importance to them and about legislative matters that may arise during the impending session."

Not sure what your legislator prefers? Make a call to their legislative assistant—not only will they be able to direct you, but developing a relationship with this "gatekeeper" can also help you form a better relationship with your lawmaker!

Additionally, sometimes your elected officials will be the ones to reach out to you directly.  NC Representative Becky Carney [D-Mecklenburg] said that in her opinion, the best way to communicate with her constituents is for them to "set up a meeting to talk about the issues that people have, or their concerns.  I prefer talking with people – communicating with me through email is a great way, [including] phone numbers so that I can call them back. Personal dialogue is sometimes better than written dialogue."

Your legislators know that advocates are vital for them to keep a finger on the pulse of their communities back home.

Councilmember-At-Large David Grosso [I-District of Columbia] shared his perspective: "Advocates are a major driving force in the legislative process. They are boots on the ground and know intricately those issues that impact different populations and communities. I want to know what their specific concerns are. As a member of the legislative body, sometimes we have a 30,000 ft. view of issues, but the advocates help us to focus on the nuance and intricacies of various matters. Having that perspective is invaluable because it enables us to tailor laws and regulations to the specific needs of the communities that we serve. Through our relationship with advocates, we are able to identify the areas where we can have the greatest impact, ensuring that we are serving a wide demographic in the most effective and efficient ways possible."

Through the voice of their constituents, elected officials are in a much better position to stay updated with a focused view of what's happening in their communities.

From DC, Maryland, Virginia, and into the Carolinas, our legislative bodies may look different; however, at the end of the day we are all people, one and the same. Our elected officials have important jobs where they represent us by making decisions that ultimately affect our daily life – but their main focus is their constituents.

If you’re up to it today, we would like to challenge you to use this information and take action. Send an email, make a phone call, or schedule a time to meet with your legislator today! Your elected officials are ready and willing to get to know you and what is important to you and your community!

A special thanks to Councilmember-At-Large Grosso [I-District of Columbia], VA Delegate Christopher Peace [R – New Kent], and NC Representative Becky Carney [D-Mecklenburg] for their contributions to this piece.

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