GET LUCKY WITH THE JOE NIEKRO FOUNDATION FOR BRAIN ANEURYSM AWARENESS WEEK

March 14-20, 2011 has been declared as Brain Aneurysm Awareness Week and to help bring awareness to the importance of early detection, The Joe Niekro Foundation has launched a national initiative called Wanna Get Lucky?.  This catchy slogan has been printed on thousands of t-shirts and being promoting to various communities across the country.  You can spread the word by helping us promote Wanna Get Lucky? The more awareness we can bring to this silent killer, the more success we can have in preventing them.  1 in 15 people in the US will develop a brain aneurysm and 50% of ruptured aneurysm victims will die within minutes.  Brain aneurysms are detectable and treatable, which is why this public awareness campaign is critical in educating the public of the warning signs, and most importantly to GET SCANNED – especially if there is history of aneurysms in the family.

Shirts can be purchased online at www.joeniekrofoundation.org and available in Men’s and Ladies tees, Women’s cap sleeve, v-neck and women’s tank tops. Colors include black, red, navy and pink.  Prices are $10 for Men’s and $12 for women’s (plus $4.95 for shipping) and all proceeds benefit aneurysm research, treatment and education.

The Joe Niekro Foundation was named in honor of Joe Niekro, a former Minnesota Twin and 22 year major league knuckleball pitcher who lost his life suddenly to an undiagnosed brain aneurysm on October 27, 2006.  Joe’s daughter, Natalie – founder and president of The Joe Niekro Foundation now commits her life to raising funds in support of brain aneurysm research, treatment and education in attempt to combat the enemy that prematurely took her father.

For more information visit www.joeniekrofoundation.org

Fibromuscular Dysplasia: An Overlooked Diagnosis

Fibromuscular Dysplasia: An Overlooked Diagnosis

This Valentines Day be good to your Heart

This Valentines Day, I decided to thank my heart for each beat of life it gives me. I jumped on the treadmill this morning and exercised my heart. What a great feeling to make a difference in your own health! Valentines is a day to celebrate love for another, why not it be the love and awe for what our body does for us each day. Our body is the house of our soul, so why not show our appreciation by doing something good for our heart.

Amazing Heart Facts From NOVA ONLINE
http://www.pbs.org/wgbh/nova/heart/heartfacts.html
Sure, you know how to steal hearts, win hearts, and break hearts. But how much do you really know about your heart and how it works? Read on to your heart's content!

    •    Put your hand on your heart. Did you place your hand on the left side of your chest? Many people do, but the heart is actually located almost in the center of the chest, between the lungs. It's tipped slightly so that a part of it sticks out and taps against the left side of the chest, which is what makes it seem as though it is located there.


    •    Hold out your hand and make a fist. If you're a kid, your heart is about the same size as your fist, and if you're an adult, it's about the same size as two fists. 


    •    Your heart beats about 100,000 times in one day and about 35 million times in a year. During an average lifetime, the human heart will beat more than 2.5 billion times. 


    •    Give a tennis ball a good, hard squeeze. You're using about the same amount of force your heart uses to pump blood out to the body. Even at rest, the muscles of the heart work hard—twice as hard as the leg muscles of a person sprinting. 


    •    Feel your pulse by placing two fingers at pulse points on your neck or wrists. The pulse you feel is blood stopping and starting as it moves through your arteries. As a kid, your resting pulse might range from 90 to 120 beats per minute. As an adult, your pulse rate slows to an average of 72 beats per minute. 


    •    The aorta, the largest artery in the body, is almost the diameter of a garden hose. Capillaries, on the other hand, are so small that it takes ten of them to equal the thickness of a human hair.


    •    Your body has about 5.6 liters (6 quarts) of blood. This 5.6 liters of blood circulates through the body three times every minute. In one day, the blood travels a total of 19,000 km (12,000 miles)—that's four times the distance across the US from coast to coast.


    •    The heart pumps about 1 million barrels of blood during an average lifetime—that's enough to fill more than 3 super tankers. 


    •    lub-DUB, lub-DUB, lub-DUB. Sound familiar? If you listen to your heart beat, you'll hear two sounds. These "lub" and "DUB" sounds are made by the heart valves as they open and close.

What empowers patient health care advocacy?

Patients advocates are revolutionizing heath care. They are taking a road less traveled to make the path easier for others.

I believe it goes beyond caring for the human beings, there is a compassion in the advocates soul that cannot be defined by words.

Patient advocates are laying the foundation in opening communication with the health care community.

We are becoming the voice of many who are too exhausted by the health care system to speak for themselves. We are active listeners. WE LISTEN. Many health care providers do not have the time to actively and fully listen to a patient. When a health care provider on average has 10 minutes of time devoted to patient care, including the physical exam, and documentation it does not leave enough time for active listening.

Patient Advocates are able to listen in several ways that physicians are not. We are blogging, we are making known how our daily life if affected by disease, this enables other patients to interact and gives us an opportunity to listen to their experiences. We are active users of Facebook and Twitter, helpful tools for active listeners. We are letting patients process and work through their disease. We are developing relationships through social media that are spilling over to more traditional ways of communicating. The telephone! My long distance bill has dramatically increased over the years, and every time I pay my enormous bill I look over who the I have listened too, patients from all over the United States and as far as South Africa. Each phone call always ends with the words “Thank you for taking the time to listen”.


Why do we advocate, and take the time to listen? I am willing to bet that each of the leading patient advocates have asked themselves at one time or another why do we bother? Advocates gain wisdom from listening, advocates are educational sponges trying to soak up and process information. We voice this information to everyone around us. We get our energy from expressing and communicating. We don’t let our disease define us, but rather we take control of our lives in a proactive way that serves others.

Our reward is seeing relationships build and communication opening within the health care community. We are partners in the health care team that are making the future better for others.

MWVA thanks you for supporting Fibromuscular Dysplasia

Midwest Women’s Vascular Advocates (MWVA) would like to thank all of our Pepsi Refresh supporters:  

Our MWVA Advocates

The many FMD patients, friends and family

The FMD Yahoo Online Support Group

Dr. Jeffrey Olin of Mount Sinai School of Medicine

Dr. Heather Gornik of Cleveland Clinic Foundation

Mayo Clinic Health Systems, ALMC

NORD- National Organization for Rare Diseases

The Joe Niekro Foundation

Pepsi Refresh Everything Canada

All of our Pepsi cause supporters

Although we did not receive the grant, the awareness that was brought to Fibromuscular Dysplasia was phenomenal!

We ended up ranking 22 out of 1000 causes! 

There were 21,251 comments made on our Pepsi refresh page, what an incredible way to spread awareness of Fibromuscular Dysplasia! Our MWVA team along with other FMD advocates posted thousands of comments on FMD educational facts, both in the United States and Canada.

Here is just one of the many comments we received, “LADIES: You may not have made it to the top drawer this time, but console yourself with the thought that you have educated MANY, MANY people to this disease! WELL DONE AND KUDOS TO YOUR PERSEVERANCE. You are truly CHAMPIONS!! “

MWVA will continue to raise awareness and support those affected by non inflammatory vascular disease. We are pleased to announce that through the efforts of the Pepsi Refresh everything challenge, Midwest Women's Vascular Advocates and the Joe Niekro Foundation have formed a partnership to help promote Brain Aneurysm Awareness and Education. We are looking forward to working closely with the Joe Niekro Foundation in pursuing our missions and future goals.