Throughout the year, our blog will feature AHA volunteer stories of survival and hope. We know there are thousands of stories like these - thats why we want to say “Thanks” to all of you for giving your time and sharing your lives with us. You can’t spell CURE without U! Thank you for all you do to build healthier lives free of cardiovascular disease and stroke. YOU’RE THE CURE!

Thursday, May 28, 2009

Call Rep.Davis to Ask Him to Sign a Letter for Heart and Stroke Funding!

Today, May 28, is the deadline for Members of Congress to sign the Heart and Stroke funding letter to President Obama.

Please help us make one final push to get Illinois Representative Danny Davis who signed a similar letter last year to sign on to this letter.

(Link to the letter) http://americanheart.org/presenter.jhtml?identifier=3066307 This letter is being circulated by the Co-chairs of the Congressional Heart and Stroke Coalition.
The deadline is TODAY.

Call Rep. Danny Davis ASAP and ask him to sign on to this letter.

Chicago Office (773) 533-7520
Broadview Office(708) 345-6857
Washington D.C. Office (202) 225-5006

Some facts you should know when calling Rep.Davis' office to ask him to sign on to the letter:

-The National Institutes of Health invests only 4 percent of its budget on heart research and a mere 1 percent on stroke research.

-Cardiovascular disease remain the No.1 killer in each state, but the Centers for Disease Control and Prevention provides just 14 states with resources to implement its Heart Disease and Stroke Prevention Program

-To sign this letter, please contact by May 28th Mina Addo in Senator Dorgan’s office (Mina_Addo@dorgan.senate.gov or 2244-2551), Katie Oppenheim in Senator Crapo’s office (Katie_Oppenheim@crapo.senate.gov or 224-6142), Amy Fisher in Representative Capps’ office (Amy.Fisher@mail.house.gov or 225-3601) or Becky Wolfkiel in Representative Platts’ office (Rebeccah.Wolfkiel@mail.house.gov or 225-5836).

Tuesday, May 26, 2009

May is Stroke Month - Get Your 2009 Soul Food Cookbook!


The power is in your hands to prevent and overcome stroke, and the American Stroke Association will provide the information and tools to support you every step of the way.

Power To End Stroke is an education and awareness campaign that embraces and celebrates the culture, energy, creativity and lifestyles of Americans. The Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership is a National Sponsor of Power To End Stroke movement.

Join the Power To End Stroke movement. Registration is FREE, and you will receive a monthly e-Newsletter to help keep you in the know about stroke and its risk factors.

Take the first step towards reducing your risk for stroke by signing up now!

Sign up today and get your 2009 Soul Food Cookbook! Just include your mailing address and e-mail when you sign up through Fil Guipoco, Cultural Health Initiatives Director at the American Heart Association at fil.guipoco@heart.org . Please put "Power to End Stroke - Blog" in the subject line.

For more information, please visit: http://www.powertoendstroke.org/.

Wednesday, May 20, 2009

Stroke Bill Passes Unanimously in the Senate! Article in Today's Tribune!

Right ER may be key after stroke
Illinois legislation would establish network of specialist stroke centers

By Judith Graham Tribune reporter
May 20, 2009

Phyllis Weiss awoke in the middle of the night, her arms flailing wildly. She tried to speak but couldn't. Her right side was paralyzed. Her husband called 911 and said she was having a stroke.

Hoping to stabilize her quickly, the paramedics took her to the hospital nearest her home in Winthrop Harbor. Now, Weiss said, she believes that was a mistake -- a neurologist didn't evaluate her -- and that she should have gone to a specialist stroke center, such as one at a hospital just across the border in Wisconsin.

On Tuesday, the Illinois Senate voted 58-0 to establish a network of specialist stroke centers in Illinois and allow ambulances to take patients to those facilities, bypassing nearby hospitals. The Illinois House previously passed the bill unanimously, and the legislation now goes to Gov. Pat Quinn.

The new system for stroke patients would mimic how emergency care is organized for people with other substantial trauma -- for instance, gunshot wounds. Generally, ambulances take these patients to hospitals with specialized trauma units instead of the nearest emergency room. Under the proposed legislation, similar arrangements would be made for stroke patients.

The goal is to minimize damage associated with this condition, the third-leading cause of death and primary source of disability in the U.S.

"We have abundant evidence that if patients are taken to a designated stroke center, they receive better care and have better outcomes," said Dr. Mark Alberts, a professor of neurology at Northwestern University's Feinberg School of Medicine.

That was the case for state Rep. Bob Biggins (R-Elmhurst), who collapsed at Chicago's City and County Building almost six years ago on his way to a meeting. After being rushed to Northwestern Memorial Hospital and given immediate treatment, he has recovered almost completely. Biggins is a sponsor of the proposed legislation.

Hospitals designated as stroke centers specialize in rapidly assessing patients and promptly offering recommended treatments. Early intervention prevents millions of oxygen-deprived brain cells from dying by breaking up clots or hemorrhages that impair blood flow. "

Every minute of a stroke, you lose about 2 million brain cells, and that's why speed is of the essence," said Dr. Ali Shaibani, a stroke expert at Northwest Community Hospital in Arlington Heights. Similarly, in trauma care there is a "golden hour" when interventions are most likely to have an impact.

Currently, when people have symptoms that suggest a stroke, they are taken by emergency medical services to the nearest hospital. Under the proposed legislation, each of the 11 EMS regions in Illinois would develop protocols for handling stroke patients.

In Chicago and several suburbs, it's likely that ambulances would be steered to "primary stroke centers" -- hospitals certified as having substantial expertise in treating stroke.

"This will profoundly change the way emergency care is delivered to potential stroke patients," said Mark Peysakhovich, senior director of advocacy for the American Stroke Association's Midwest operations.Currently, there are 26 primary stroke centers in Illinois, mostly in the Chicago area. As many as eight hospitals expect to receive certification from the Joint Commission, a group that accredits health-care facilities, in the next few months. Another dozen are preparing to apply, said Kathleen O'Neill, director of quality initiatives at the stroke association's Midwest chapter.

In rural parts of the state, smaller hospitals may join networks of medical institutions that coordinate care of stroke patients. Also, someone having a stroke could be taken to an "emergent stroke center" offering basic treatments, stabilized there and then taken elsewhere for more advanced care.

Similar efforts to improve stroke care already have been launched in New York, Florida, Massachusetts, the Bay Area in California and cities such as Houston and Phoenix.

In a 2006 article in the journal Neurology, researchers in New York documented a doubling in the use of a crucial clot-busting drug, tissue plasminogen activator (TPA), after a stroke network was created. In Houston, TPA use for stroke patients more than tripled to 15 percent.

"Unfortunately, TPA remains widely underutilized," said Dr. Shyam Prabhakaran, director of the stroke program at Rush University Medical Center.

Illinois' plan is less prescriptive than many, allowing for regional flexibility, and that proved critical to the Illinois Hospital Association's support, said Howard Peters, the group's senior vice president. Initially, some hospitals were worried about being bypassed and losing patients.

For her part, Weiss, 59, is convinced that the change is needed.

She vividly remembers that night almost two years ago when, mentally alert but unable to control her body, she woke her husband and saw him recognize the terror in her eyes.

Weiss remembers hearing her husband ask the paramedics to take her to Lake Forest Hospital, about 40 minutes away. "That can't be done, she needs to go to the closest hospital to be stabilized," she recalls them responding.

She said that local hospital didn't call in a neurologist or administer TPA. There's no way to tell if Weiss, who spent more than a year after her stroke learning how to talk again and use her right arm, was compromised by the hospital's care. But a month ago, she stopped by her local fire department with a request.

"I said if I have another stroke, I want them to transport me to a stroke center [hospital] 11 miles away in Wisconsin," said Weiss, who learned about the hospital after her stroke. "At least that way, I'll be taken care of by experts."

jegraham@tribune.com

Monday, May 18, 2009

Article on the Menu Labeling debate in Today's Trib

The American Heart Association is quoted in a Chicago Tribune article in today's Business Section. Here's the link if you'd like to check it out: http://www.chicagotribune.com/business/chi-mon-menu-boards-0518-may18,0,384155.story

At issue is the requirement to post nutrition information, such as calories and/or grams of fat, on the menu boards or in menus of chain restaurants. To us it seems like a logical idea. The restaurants already provide you with the price listed next to the item. Why not also provide customers with the potential health cost of purchasing and consuming the product?

What do you think?

Friday, May 15, 2009

Law Signed by Governor Quinn in April Helps Kids in Illinois with Stroke/Heart Defects

Governor Signs Coulson Bill to Mandate Coverage of Habilitative Services for Children with Genetic Defects

Last month, Governor Pat Quinn signed into law legislation championed by State Representative Coulson and State Senator Crotty that will ensure children who need habilitative services due to a trauma or injury at a young age or a congenital or genetic birth defect have health care coverage.

Specifically, Senate Bill 101 mandates insurance companies to provide coverage for occupational therapy, physical therapy and speech therapy for children under the age of 19 with congenital or genetic defects that developed at birth or at a young age. The legislation passed in the House and Senate unanimously. Senate Bill 101 from the 95th General Assembly requires insurance companies to cover these medically necessary therapies for children born with conditions such as autism, cerebral palsy, down syndrome and other neurological conditions.

Senator M. Maggie Crotty and Representative Beth Coulson championed the legislation so insurance claims would no longer be denied because the therapy was “habilitative” in nature. Some insurance companies were approving coverage to help a child recover previously acquired skills lost because of injury or illness since the therapy was rehabilitative in nature. However, in many cases, denials were given forcare (and called “habilitative” in nature) if the child had not previously developed basic skills such as walking or talking.

“The system was confusing and discriminatory to families,” Sen. Crotty explained. “In recent years, insurance companies have denied these critical therapies for some children, while turning down coverage for others. This law rectifies inconsistent coverage for kids who have been punished for no good reason. In these tough economic times, we are pleased to take just one major expense off the backs of hard-working families who are trying to give their kids basic skills to help them reach their true potential.”

“As a physical therapist, I have personally witnessed the amazing recovery of children who have access tohabilitative services. Many children who receive habilitative services demonstrate tremendousimprovement and progress. Covering the costs of these services has the potential to improve a child’soverall development and quality of life,” Rep. Coulson said. State programs in Illinois already provide habilitative care to most Medicaid patients, but there was no requirement for private insurers to do so. Pediatricians have long been frustrated when trying to obtain habilitative care for their patients with private insurance. Families with children needing medically indicated,available therapies to acquire basic skills have had to pay for the services themselves or forgothem. This sacrifices a window of opportunity to enhance a child’s functioning in daily life activities.

Health care providers and families know that suboptimal intervention early in life not only impacts how a child performs in the short-term but can have detrimental effects on long-term outcomes. “This law will go a long way toward the goal of each child in Illinois receiving the therapies they need to achieve their truepotential,” said Dr. Ed Pont, Past-President of the Illinois Chapter of the American Academy of Pediatrics(AAP).Alan Rosenblatt, MD, FAAP, a neurodevelopmental pediatrician, used his experience working on aMaryland law to push for similar reform in Illinois.

“I knew from the Maryland bill that we could affectthe care of children with a wide range of conditions, from cerebral palsy and other motor disorders tolanguage and cognitive disabilities to those with sensory impairments and genetic conditions,” Dr.Rosenblatt said. Analysis of the economic impact of the Maryland habilitative care law showed that the cost of that mandate was less than 0.1% of the average annual insurance premium. Habilitative carelegislation as encompassing as that in Illinois and Maryland exists only in the District of Columbia, which passed a similar measure in 2006.

“We need this type of legislation to ensure coverage of the unique and important therapies children withcongenital, genetic or early acquired disorders require,” Dr. Rosenblatt said. “This will help children withautism and countless other delays and disorders maximize their true potential.”

“I am absolutely thrilled to be able to call the families in my district and let them know that they can now receive the help they need. I will continue to fight for children with disabilities – to help ease their hardships and make certain that they have access to the very best health care programs,” Rep. Coulson said.

If you or someone you know has a child who has had a stroke or suffers from another defect that requires these therapies and you want more information, the following resources/organizations can help!:

Contact Rep.Coulson
Springfield Office:
220-N Stratton Office Building
Springfield, IL 62706
(217) 782-4194
(217) 782-7613 FAX

District Office:
3801 West Lake Avenue
Glenview, IL 60026
(847) 724-3233
(847) 724-8682 FAX
Cook County

Contact Senator Crotty

Springfield Office:
Senator 19th District
122 Capitol Building
Springfield, IL 62706
(217) 782-9595

District Office:
5119 West 159th Street
1st Floor East
Oak Forest, IL 60452
(708) 687-9696
(708) 687-9801 FAX

Contact SSEEO! (Stroke Survivors Empowering Each Other) , http://www.sseeo.org/

Contact Health and Disability Advocates, http://www.hdaadvocates.org/

Thursday, May 14, 2009

Hospital "Charity" Care Debate Heats Up Again

Over the last few years, many of our advocates have been closely following the ebb and flow of a running debate about the issue of charity care provided by non-profit hospitals in Illinois, especially in the Metropolitan Chicago area.

Critics complain that while non-profit hospitals enjoy significant tax benefits, they do not give enough back to the community in the form of charity care for uninsured and under insured patients. On the other hand, hospitals point out that they are already operating on thin margins while treating more and more needy patients as the economy slows further. Hospitals are also becoming much more proactive and effective in communicating the total benefits they bring to their communities rather than focusing on narrowly defined "charity" care figures.

Although the American Heart Association has not taken an official position on the specifics of the current debate, applying a broader perspective in order to accurately assess how hospitals benefit the rest of us, seems to make sense. We work with many hospitals throughout Illinois who generously contribute funding for heart and stroke research. Although such funding ultimately results in saved lives, reduced misery and reduced medical costs, "charity" care does not take such contributions into account.

After ebbing for a while, the debate recently entered another flow stage after Cook County Commissioner Roberto Maldonado introduced an ordinance which would penalize non-profit hospitals if the amount of charity care they provide is deemed insufficient.

In responding on behalf of their member hospitals, the Metropolitan Chicago Healthcare Council (MCHC is essentially the "hospital association" for the Chicago area) unveiled a brand new website which asks visitors to "Support your local hospital." The website features a short movie which, in my opinion, effectively communicates a big picture view of how hospitals benefit the community and asks visitors to sign an online petition to show their support.

I think that MCHC is moving in the right direction. Hospitals cannot afford to play defense on this issue any longer. Not unlike a political campaign, they have to proactively define themselves before their critics do. This issue will not be put to rest unless hospitals proactively campaign to define charity care in a way that reflects their reality.... (I know, easier said than done!)

Here is a link to the new MCHC-produced website: http://www.supportourhospitals.com/. Take a minute to visit the site and please let us know what you think by leaving us a comment on the blog about the movie and about your views on the issue overall. We look forward to hearing from you!

Posted by: Mark Peysakhovich (mep@heart.org)

Monday, May 11, 2009

Senator Burris and Senator Durbin Co-Sponsor FDA Bill! Thank Them TODAY!

Thanks to your efforts in contacting our Illinois U.S. Senators, both Senator Burris and Senator Durbin have signed on to co-sponsor the Family Smoking and Tobacco Prevention Act!!!

Thank Senator Burris and Senator Durbin TODAY by following this link!

The provisions in the Family Smoking Prevention and Tobacco Control Act will save lives by finally giving the Food and Drug Administration the authority to regulate tobacco products and to curb the industry’s marketing of their deadly products to our children.

Tobacco kills over 400,000 Americans every year. Approximately 150,000 of these smoking-related deaths are from cardiovascular disease. Smoking is a major cause of cardiovascular disease, our nation’s number 1 killer. Despite these alarming numbers, tobacco has remained largely unregulated, exempt from basic consumer protections.

As you know, this is important legislation that will protect our children and other loved ones from the deceptive marketing practices of the tobacco industry.

TAKE ACTION! Thank our U.S. Senators in Illinois for their Leadership on this Issue!

Tuesday, May 5, 2009

AHA Needs Your Help Contacting U.S. Senators!!! TAKE ACTION TODAY!

We’ve just learned that Senator Kennedy plans to reintroduce the FDA tobacco bill in the Senate early next week. We need your assistance in generating as many calls as possible into your Senators’ offices asking them to cosponsor the legislation.

We expect Senator Kennedy’s Health, Education, Labor and Pensions (HELP) Committee to mark-up the legislation the week of May 11th and for the full Senate to consider the legislation in early June. Last year, the legislation had 60 sponsors and we will need to get those Senators back on as cosponsors as well as add additional new cosponsors this year.

It is important that Senators hear from constituents who want them to cosponsor the bill. We ask for your assistance in getting calls into Senators’ offices, asking them to cosponsor this legislation.

***It's easy to take action, just follow the instructions below and after you call, e-mail Melissa Horn, Illinois Grassroots Advocacy Director, at Melissa.Horn@heart.org to let her know you've taken action!***

All Senators can be reached through the Capitol switchboard at 202-224-3121. Call Your U.S. Senator TODAY and urge them to co-sponsor the FDA tobacco bill!

When you call, your simple message is this: Senator Kennedy plans to reintroduce his legislation, giving FDA authority over tobacco products. Please COSPONSOR the Family Smoking Prevention and Tobacco Control Act, which provides for effective FDA regulation of tobacco products.

Thank you for your help on this important legislative issue!
Want more information on the FDA tobacco bill? Follow this link!

You're Invited! Go Red for Women Luncheons in Naperville and Joliet, IL


Go Red For Women Suburban Events
Thursday, May 7th, 2009
10:30AM - 1:30PM
Hotel Arista
2139 CityGate Lane
Naperville, Illinois

Thursday, May 14, 2009
10:30AM - 1:30PM
Patrick C. Haley Mansion
17 South Center Street
Joliet, Illinois

Please join us for Health Exhibits, Screening and Social
Networking followed by Passion Speakers at our luncheon
hosted by Laura Schwartz.
Individual tickets are $100 and can be purchased by
contacting Jodi Beyhl at 312.476.6667
or jodi.beyhl@heart.org

Monday, May 4, 2009

Previous Illinois Youth Advocate Speaks Out About AHA Lobby Day



From Michelle Ballasiotes, Pediatric Stroke Survivor and Youth Advocate of the Year, 2009:

This is my third year going to Washington DC for Lobby Day and it just keeps getting better and better. There is nothing like seeing your friends from the past years! We got there on Sunday and stepping off the elevator to go to dinner I ran into so many familiar faces: Joe Goldzweig (my favorite funny friend from Illinois), Sarah Anne Voyles (Youth Advocate of the Year for 2007), Sarah Exley (mom of a pediatric stroke survivor from Wisconsin) and others! I went to Lobby Day this year with Amber Boatright and her mom, Brenda Boss. Amber is a stroke survivor too. She had her stroke 3 days before her senior year in high school. We went down to the hotel lobby to meet 2 more mothers of young stroke survivors, Jessica Spear and Erin Grady. Our now very large group all went to dinner together. We got to talk about why we were at Lobby Day and some of the moms asked me questions about their kids, because their kids are all younger than I am. It was a great feeling to know that I was helping someone.

Monday was meeting day. I went to "Your Voice in the Media" and the speaker, Sarah Exley was amazing, as always. I got to help greet people at the door for the Survivor's Luncheon which was fun. I liked hearing the speakers: Sarah Exley again and a 10 year-old boy who had been through many heart surgeries. His speech was good because he feels just like I do. He wants to be treated like a normal kid. Next, I was at the Youth Advocate Training and we got lots of good instruction for Capitol Hill. The best part was it was fun. I give two thumbs up to Sarah Anne Voyles and Lee Storrow for leading the group.

After the youth training, we went to "Hook, Line and Sinker" training. Jessica Spear (this is her first Lobby Day and she is very passionate) went up on stage for a pop quiz on what to do at the Congressional meetings. She did great. I thought the meeting was helpful for what exactly to say on the Hill. We got to break out into our State meetings and go over who goes where and at what time. We also role played a practice meeting. Everyone was crammed full of information after all of the day's meetings!

Tuesday morning finally came. I had a yummy breakfast before I had to go up on stage to get my Youth Advocate of the Year award. I was very nervous at the last second, but my mom said I did fantastic. She is usually honest with me, so I believed her. Very quickly after the breakfast, we had our first meeting on the Hill. It is so enjoyable for me to tell my story, listen to others and amaze the Congressmen with all of the Youth Survivors from Georgia this year. I think we got most of them to do the very important asks. I went to 5 meetings, sometimes the member was there and sometimes we met with their aide. I liked meeting with all of them because I feel like they were listening to us.

Going to Lobby Day is so exciting, emotional and powerful all at once. I feel like I belong and that everyone understands my situation, even though I am a lot younger than most everyone else. I would love to do this forever and ever because I know that together, we can make a difference!

Friday, May 1, 2009

2009 You're the Cure on the Hill Advocates Speak Out to Make Heart Issues a National Priority!



Congratulations and thank you to all of you for making our 2009 You’re the Cure on the Hill in Washington, DC a huge success!!! Your passion and stories helped us make a difference in lobbying our Illinois Congressional Members and Staff in Washington, DC on Tuesday, April 21, 2009.

Science Council Attendees
Dana Edelson
Pamela Garmon Johnson
Debra Geihsler
Mariann Piano
Dorothy Lanuza
Hossein Ardehali
Lynne Braun

You're the Cure Advocates
Almarie Wagner
Phil Fasone
Bernardo Salazar
Erin Grady
Jaime Olsen
Liz Andrews
Joseph Goldzweig
Andrea Sullivan
Debbi Waters
Kate Steigerwald
Clarke Stegierwald
Alec Duncan
Paul Kalil
Melissa Horn

We successfully dropped off and spoke with 19 Congressional districts and both our Illinois U.S. Senate offices while in DC, asking them to support increased funding for heart disease and stroke research and prevention programs as well as highlighting the key aspects we’d like to see in meaningful health care reform: accessibility, affordability, and adequate care!

Overall, we had 465 participants from all 50 states – which was tremendous! They participated in 354 meetings on the Hill, including 100 meetings in the Senate and 254 in the United States House of Representatives. Almost half of these meetings (45%) were scheduled to be meetings with the actual Member of Congress. We were extremely pleased that we had You’re the Cure advocates who covered 92% of the targeted districts. Overall, we had 220 meetings with Democrats, 131 meetings with Republicans and 2 Independents.

The Asks- present and future: This year You’re the Cure advocates asked lawmakers to sign the letter to the President urging him to make funding to fight heart disease and stroke a top priority. The deadline for signatories is May 20th. As Gov’t Relations staff does follow-up on this end, we encourage attendees to follow up with the offices directly as well and remind them of the ask they made in the Lobby Day meetings to secure signatories. The letter can also be accessed from on the web: http://americanheart.org/presenter.jhtml?identifier=3066307. Healthcare reform is still moving full steam ahead with the possibility of a bill introduction prior to the Memorial Recess Break. Although bills like HEART for Women, FDA, and FIT Kids were not specific asks for all of your meetings, we are already seeing some Members signing on thanks to the visits.