Honoring Brain Aneurysm Awareness Week March 12-18th

In 2012, more than 30,000 people in the United States will be affected by a ruptured brain aneurysm.  More than 40% of these aneurysms will prove to be fatal.  As we enter the month of March that will honor Brain Awareness Week March 12-18th, The Joe Niekro Foundation would like to share information about the warning signs of a brain aneurysm.  Research shows that early detection can make a significant difference in the outcome of a brain aneurysm.

Brain Awareness Week will be celebrated from March 12-18, 2012, and will be a global campaign to increase public awareness about the progress and benefits of brain research.  Each year, Brain Awareness Week campaign combines the efforts of universities, hospitals, government agencies, schools, and professional associations in a week-long celebration of the brain.

The Joe Niekro Foundation is committed to providing critical awareness, education, support and research funding to reduce the incidence of brain aneurysm ruptures.  The goal of our organization is to educate people about the dangers of brain aneurysms and save lives by funding vital research and increasing awareness.

Brain aneurysms can affect people of any age and as many as 1 in 15 people have an unruptured brain aneurysm.  Even with today’s advanced nuero-imaging technology, 25% of people are misdiagnosed or receive delayed diagnoses for brain aneurysms.  To ensure individuals receive the appropriate care in an emergency situation, it is important to raise awareness of the warning signs and symptoms.

There are many risk factors that doctors and researchers believe may increase your risk of developing an aneurysm or, if you already have an aneurysm, may increase your risk of it rupturing including smoking, hypertension, drug use, infection, tumors, traumatic head injury and a family history of aneurysms.

Most brain aneurysms cause no symptoms and may only be discovered during tests for another, usually unrelated, condition. In other cases, an unruptured aneurysm will cause problems by pressing on areas within the brain. When this happens, the person may suffer from severe headaches, blurred vision, changes in speech, and neck pain, depending on the areas of the brain that are affected and the severity of the aneurysm.

Aneurysms may burst and bleed into the brain, causing serious complications including hemorrhagic stroke, permanent nerve damage or death. Once it has burst, the aneurysm may burst again and rebleed into the brain, and additional aneurysms may also occur. More commonly, rupture may cause a subarachnoid hemorrhage – bleeding into the space between the skull bone and the brain.

Shirts are available in Mens and Ladies styles, in a variety of colors and sell for $14.95 (includes shipping)

The importance of early detection of these sudden and silent killers is critical which is why The Joe Niekro Foundation has embarked on a national initiative called Wanna Get Lucky?  This t-shirt campaign is designed to educate the public on the importance of early detection. Help us save lives by joining this campaign to spread the word of why it’s important to Get Lucky. All monies raised from t-shirts sales goes directly to aneurysm awareness and education.  So as we enter into this critical month of raising the importance of brain aneurysm awareness, please join us by sporting a Wanna Get Lucky? t-shirt.  The life you save…could very well be your own.

Thank you for your support and continued assistance in helping us defeat these silent killers!

 

Thanksgiving Eve…a reflection of thanks!

I can’t believe that 2012 is almost over – here we are on the eve of Thanksgiving, soon to be ringing in the New Year and I can’t help but wonder where the last 10 1/2 months have gone.   With non-stop travel, 20 hour work days, a growing business and a foundation that is on the verge of breakthrough, I am reminded that the cat-naps and down time I rarely get is all worth it because of where I am today.   Here I sit with a huge support system that is sharing in my vision of greatness - MY goal which has now become THEIR goal to educate the public on the importance of brain aneurysm research, treatment and education is happening before our eyes.  With a Board of Directors that is second to none and supporters that believe in our mission, The Joe Niekro Foundation truly is on the verge of greatness!  In just 10 short months, we have expanded to 6 nationwide chapters, established key relationships with phenomenal research hospitals, gained great support from new corporate partners and developed a Medical Advisory Board consisting of the top neurologists, neurosurgeons and neuroradiologists in the country.  Each day The Joe Niekro Foundation is touching and changing lives and I am so thankful for what we have become and where we are headed!  Look out 2012, here we come…together we will continue our mission to educate people about this devastating condition that is effecting 1 in 15 Americans.  We hope you will join us in this fight….a fight worth every bump and bruise that happens along the way.  God Bless and Happy Thanksgiving to all!

 

 

Another Supporter Gets Lucky?

I have to share this amazing post by someone who understands the importance of Getting Scanned.  Please read the below post by The Afternoon Napper, a true survivor who’s perserverence and determination hasn’t let her condition stop her from saving the lives of others.

Posted by: The Afternoon Napper

It is very strange to me when someone uses the word “survivor” to describe me. I have never considered myself as such. Instead I say to myself, “Nope, this isn’t it” and afterwards, “Well, I’m not dead yet.” Experiencing life-threatening medical illnesses and events and making it through them is just what I do. I’m stubborn that way. I’m lucky that way.

In 2009, doctors discovered I had four brain aneurysms. (How this discovery came about is a long story for another time.) Three of the four
aneurysms were repaired via coiling, a fascinating process in which tiny platinum coils are run through the vascular system into an aneurysm and deployed to create a basket type structure. The procedure means only a day or so in the hospital vs. clipping via a craniotomy, which requires a much longer stay but is the most common aneurysm treatment. Only three of my four aneurysms were treated via coiling because the fourth—at less than 1 mm—is considered too small for coiling. It is however still there, and I think about it often. So far none of my doctors have recommended that I elect for an attempt at clipping the aneurysm. I am monitored with a yearly brain scan to check for growth or changes in the aneurysm. I have mixed feelings because on one hand I would like for the aneurysm to be large enough to treat with coiling, but on the other hand I do not want my aneurysm to grow, and generally, the fewer people
rooting around in my brain the better. My good friend, Amanda, says that I
should name the aneurysm. I’ve though about calling it Fred.

My status as one who has brain aneurysms—lest that word “survivor” be used
again—has led to my involvement with the Joe Niekro Foundation. The foundation was established in 2007 to honor baseball’s Joe Niekro, who died
suddenly as the result of a ruptured brain aneurysm in 2006. The problem with
aneurysms is that they tend to be asymptomatic until they rupture. Discovery is
often incidental. The foundation’s head-turning tag line speaks to that: “Wanna
Get Lucky? Get Scanned.” Note that the “Wanna Get Lucky?” bit is the only thing on the front of the foundation’s t-shirts, a design trick that I’m sure has
drawn more than one cat call by wearers’ way. The tongue-in-cheek saying has the tremendous benefit of being memorable and hopefully—after the cat calls—has prompted more than one discussion about aneurysms among those who had not previously thought about them.

On Nov. 21, I will be traveling to Raleigh, N.C. to be a speaker at a Niekro Foundation brain aneurysm support group. The meeting will be held in
conjunction with Duke Medicine. Doctors at Duke coiled foundation secretary Janie Schaeffer’s unruptured aneurysm, which is the only reason her Carolina blue blood continues to flow. I and my fellow speaker also are Tarheels. I’m hoping the two schools’ rivalry will result in a competition over who can send more med students and doctors to the meeting in order to hear our patient and survivor stories. The meeting will be a truly rare event. I am an intimal
fibromuscular dysplasia patient—FMD is rare, IFMD represents less than 10
percent of cases (so far I know of five cases internationally). My fellow
speaker experienced spontaneous coronary artery dissection, which up until recently was thought too rare to effectively study. We’re not zebras; we’re unicorns.

Those interested in attending the meeting are advised to contact the Niekro
Foundation via the organization’s website, Facebook, or Twitter. I’ll also be sure to more specific meeting information as it becomes available via The Afternoon Nap Society blog, Facebook, and Twitter.

The Joe Niekro Foundation Announces Newest Medical Advisory Board Member

The Joe Niekro Foundation is thrilled to announce our newest Medical Advisory Board Member, Robert D. Brown, Jr., MD, MPH.  Dr. Brown completed his medical school training at Mayo Medical School, neurology residency at Mayo Clinic and stroke and cerebrovascular disease fellowship at Mayo Clinic.  He also has a Masters of Public Health in epidemiology and clinical trial design.  He is a Consultant in the Department of Neurology, Mayo Clinic, Rochester, MN, Chair, Department of Neurology, and the John T. and Lillian Matthews Professor of Neuroscience, College of Medicine, Mayo Clinic. He is a previous recipient of the Mayo Distinguished Clinician Award, Mayo School of Continuing Medical Education Outstanding Faculty Award, Mayo Individual Award for Excellence and the American Heart Association Stroke Leadership Award.   Dr. Brown has been elected to membership in the American Neurological Association, and is a fellow in the American Academy of Neurology and the Stroke Council of the American Stroke Association.  His research interests include cerebrovascular diseases of all types including intracranial aneurysms, stroke prevention, acute ischemic stroke, intracranial vascular malformations, primary central nervous system vasculitis and the epidemiology of cerebrovascular disorders.  He has authored or co-authored over 170 peer reviewed manuscripts, 30 book chapters, three textbooks on stroke and cerebrovascular diseases, and served as the editor for a comprehensive monograph on clinical neurology.  He has served as principal investigator, and on the executive and/or steering committees for numerous NIH-funded studies, including principal investigator of the International Study of Unruptured Intracranial Aneurysms.

Dr. Brown has been influential in establishing a strong partnership with The Joe Niekro Foundation and Mayo Clinic and we look forward to continuing to raise funds to support brain aneurysm research, treatment and education.  Click here to see Dr. Brown’s appearance in a recent Joe Niekro Foundation PSA.

JNF Vice President, Kari Ulrich (left), Natalie Niekro and Dr. Brown with Minnesota Twins alum Tim Laudner, Dan Gladden and Tony Oliva for Brain Aneurysm Awareness Day at Target Field

Natalie Niekro, Dr. Brown and Kari Ulrich at Target Field for the pre-game ceremony for Brain Aneurysm Awareness Day

Surgeons Treat Brain Aneurysms Through the Nose

Surgeons have discovered a way to treat brain aneurysms through the nose

Traditional methods of treating a ruptured brain aneurysm usually involve pretty invasive techniques, such as removing a piece of a patients skull, but surgeons at the University of North Carolina at Chapel Hill School of Medicine have found a new way to stop the bleeding – and they do it by going right through the nose.

In a report published in the March 2011 edition of the journal Neurosurgery, Dr. Anand V. Germanwala and Dr. Adam M. Zanation describe a case involving Alfreda Cordero, who was the first person to undergo this innovative surgery.

“It really pushes the entire field forward,” Zanation said in a news release. “This isn’t going to change all aneurysm treatment tomorrow, but it gets the ball rolling so we may provide an additional option to future aneurysm treatment.”

Instead of doing open brain surgery or endovascular coiling, which involves snaking a catheter through the groin up to the brain to stop the bleeding – surgeons opted to thread their tiny equipment through Corderos’ nose to reach the two aneurysms, which were located right behind her nasal cavity. The new approach is called “clipping the aneurysms through the nose.”

“It’s taking the best from the coiling procedure, because it’s minimally invasive, and taking the best from the clipping procedure, because it’s more permanent — and putting them together,” Germanwala said. “We’ve proved that it can be done safely, it can be done effectively, and we can treat multiple aneurysms. It is something we can certainly consider in the future.”

Two years later, Cordero is healthy, and the surgeons consider the procedure a great success. “Her recovery was remarkable,” Germanwala added.

A brain aneurysm occurs when there is a bulge or ballooning in a blood vessel in the brain, and it often looks like “a berry hanging on a stem.”

And while most brain aneurysms don’t rupture or create health problems, when one does, it can turn deadly very quickly. As for surgery through the nose, the surgical team has used a similar technique to treat brain tumors, but never for a ruptured aneurysm.

To view Corderos’ story, click here.

Measuring Unruptured Aneurysms

This novel study established a new standard for the measurement of aneurysm treatment success, target aneurysm recurrence rate, and proves that coiling in an excellent treatment for ruptured and unruptured aneurysms.

Begun in 2007, the MAPS trial is the largest, most rigorous randomized controlled study to-date on the clinical effectiveness of coils for treating both ruptured and unruptured aneurysms, which are estimated to affect approximately 5% of the population. Designed and led by Principal Investigators S. Claiborne Johnston, M.D., Ph.D., Cameron McDougall, M.D., and Anil Gholkar, O.B.E., M.B.B.S., the trial examined 626 patients worldwide with a single aneurysm.

Implanted in more than 250,000 patients worldwide, GDC Detachable Coils are made of very soft platinum wire and were the first coils cleared by the FDA for the minimally invasive treatment of brain aneurysms in 1995.  Cleared in 2002, Matrix2 Detachable Coils incorporate a PGLA polymer on the outside of a traditional platinum coil that is designed to degrade over time and promote rapid tissue development within the aneurysm.

Matrix Coils employ a proprietary outer copolymer coil over an inner platinum main coil. The copolymer runs the entire length of the main coil and constitutes approximately 70% of total coil volume.

“While the neurovascular specialty commonly measures aneurysm treatment success with angiographic images, we believe success should be more closely aligned with patients’ clinical outcomes,” Mark Paul, president of Stryker Neurovascular, was quoted as saying. “The MAPS Trial demonstrates the validity of TAR as a clinical endpoint and proves aneurysm coiling is a very effective therapy with excellent clinical outcomes.”

In the trial, 96% of patients with unruptured aneurysms and 90% of patients with acutely ruptured aneurysms were alive and free of disability out to 15 months after treatment. Trial results also demonstrate that, overall, Matrix2 Detachable Coils are as effective as GDC Detachable Coils (TAR rates of 13.3% vs. 14.6%, respectively).  In aneurysms with good occlusion (minimal blood flow entering the aneurysm) immediately post procedure, Matrix2 Detachable Coils demonstrate a statistically significant, superior long-term TAR rate of 2.7% compared to GDC Detachable Coils (9.6%).

SOURCE: Society of NeuroInterventional Surgery (SNIS) 8th Annual Meeting in Colorado Springs

 

Texas – Here We Come!

On September 13th, The Houston Astros will honor one of baseball’s most renowned pitchers and former Astro Knuckleballer, Joe Niekro.  Niekro spent 22 years in the major leagues, notching 221 wins and still holds the record, with his brother Phil, of the most successful brother combination in major league history, with 539 wins and the record of the winningest pitcher in Houston Astro history. On October 27, 2006, Joe passed away from a sudden brain aneurysm.  Today, his legacy lives on through The Joe Niekro Foundation, committed to the awareness and funding for aneurysm research and treatment.  To honor this knuckleball legend, The Houston Astros will host “Brain Aneurysm Awareness Night” at Minute Maid Park on September 13, 2011. Attending will be, President and Founder of The Joe Niekro Foundation, Joe’s daughter, Natalie, with a special on field ceremony prior to the game. Natalie will be joined by former teammates, Houston alumni, Larry Dierker, Art Howe and Enos Cabell, along with several aneurysm survivors from the Houston area for a special on field ceremony.  From 5:30-3rd Inning, fans can visit The Joe Niekro Foundation booth on
the concourse and receive a Wanna Get Lucky? t-shirt and autograph from these three former Astros in exchange for a minimum donation of $20.  Wanna Get Lucky? is the foundation’s national awareness  campaign to educate people on the importance of early detection. During the game, fans will also be encouraged to participate in a “Text to Give” campaign by texting the word Strikeout to 20222.  By doing so, a $10 donation to The Joe Niekro Foundation will appear on the donor’s cell phone bill.

Click here to watch the exclusive video that will be shown during the game on September 13th.  Come on Houston, join us in the fight and Knuckle Up with us on the 13th.

From Minute Maid, its off to Kingwood, TX for the 1st Annual Joe Niekro Foundation Golf-A-Thon on September 16th at Kingwood Country Club.   Participants can tee-it-up for 18 or 36 holes, all while raising pledges for the holes they complete from donations secured prior to their play.  With Joe Niekro’s jersey being #36, we encourage all to pay tribute to Joe and sign up for a full day of two rounds of 18.  Avid, as well as the novice golfers, will find this day one filled with fun, excitement and lots of laughs.  Grab your clubs and come join the fun as we compete for pledges on the links.

Its not too late to register, so Click Here to get signed up today!

 

Thank You Minnesota! The Twin Cities ROCK!

Foundation Board Member, Kari Ulrich and Medical Advisory Board Member, Dr. Robert Brown, join Natalie Niekro with Tim Laudner (left), Dan Gladden (center) and Tony Oliva (right) for the pre-game autograph session

What a day, what a day, what a day!!!!!  It was Brain Aneurysm Awareness Day at Target Field in honor of The Joe Niekro Foundation.  My day started with a fabulous pre-game autograph signing session with former Minnesota Twins players Dan Gladden, Tim Laudner and Tony Oliva.  Hundreds lined up to make a $20 donation to The Joe Niekro Foundation in exchange for a Wanna Get Lucky? shirt that would then be autographed by these three greats.  What can I say – not only are these three amazing, but the Minnesota fans are too!  What smiles, positive attitudes and compliments they made as they made their way through the long line.  My right hand gal through it all – Mrs. Kari Ulrich – without you Kari, today would never have been what it was.  I can’t thank you enough for your vivacious energy, fundraising tenacity and pure commitment to our cause.

Kari and Natalie sporting their Wanna Get Lucky? shirts

Kari, an aneurysm survivor herself, didn’t slow down once today!  As we made our way onto the field for the pre-game ceremony with Dr. Robert Brown, neurologist and brain specialist from Mayo Clinic, we were welcomed by a wonderful applause from the Minnesota fans, with their generosity continuing through the night as we collected donations through the foundation’s Text to Give campaign.  As message boards lit up around the stadium with “Text STRIKEOUT to 20222 and make a $10 donation to The Joe Niekro Foundation” we watched hundreds grabbing their cell phones in support of our cause.  We want to thank all those that supported us today, plan to support us in the future and will continue to spread the word about our organization and mission.

If you haven’t yet, grab your phone now and Knuckle Up for Aneurysm Research – text STRIKEOUT to 20222!  Your donation WILL make a difference.

Text STRIKEOUT to 20222 and make a $10 donation to support brain aneursym research, treatment and awareness

State of Texas Declares September 2011 to be Brain Aneurysm Awareness Month

On April 28, 2011 the Texas State Legislature passed a resolution declaring September 2011 to be Brain Aneurysm Awareness Month.  The resolution is designed to raise awareness of the dangers of brain aneurysms and increase public awareness of the symptoms and treatments available.

The resolution was sponsored by Representative Vicki Truitt.  Truitt filed the resolution at the recommendation of Dana Beard, whose son, Taylor Mangham, passed away from a brain aneurysm in January 2010 at the age of 15.

“We are thrilled to have September designated as Brain Aneurysm Awareness Month here in Texas,” said Dana Beard.  “We want to urge everyone to use this time for fundraisers, walks and awareness events.  Together, we can truly make a difference in educating individuals about the dangers of brain aneurysms and help prevent other families from experiencing a loss like ours.”

About Brain Aneurysms
Brain aneurysms can occur in anyone, at any age. An estimated 6 million people in the United States have an unruptured brain aneurysm. Each year, about 24,000 people in the U.S. will suffer from a ruptured brain aneurysm.   About 40% of those experiencing a ruptured brain aneurysm will die.

People who suffer a ruptured brain aneurysm will often have warning signs. The following warning signs precede about 40% of major ruptures, including localized headache, nausea and vomiting, stiff neck, blurred or double vision, sensitivity to light and loss of sensation

If the brain aneurysm is diagnosed early with proper screening, it can be treated before it ruptures, saving lives.    However, most people with unruptured brain aneurysms are completely asymptomatic have no symptoms, while others may experience some or all of the following symptoms, which suggest an aneurysm, including cranial nerve palsy, dilated pupils, double vision, pain above and behind the eye and localized headaches.

There are a number of risk factors that medical professionals believe contribute to the formation of brain aneurysms.  Avoiding or managing these factors can help decrease the potential for brain aneurysms, including smoking, hypertension, drug use, infection, tumors traumatic head injury, family history, select inherited disorders and presence of an arteriovenous malformation.

The Joe Niekro Foundation recently recognized March 14-20, 2011 as Brain Aneurysm Awareness Week as a way to help bring awareness to the importance of early detection, The Joe Niekro Foundation launched the national initiative, Wanna Get Lucky?. This catchy slogan was printed on thousands of t-shirts and promoted to various communities across the country. One of the communities that took an active part was Kingwood Medical Center. Hospital staff donated to the cause with the purchase of Wanna Get Lucky shirts and commemorative bracelets. The bracelets commemorated the hospital’s 100th brain surgery, while the shirts brought awareness to the importance of brain aneurysms and early detection.  Thank you Kingwood Medical Center for Getting Lucky with The Joe Niekro Foundation.

You too can help us bring awareness to this crucial campaign by sporting one of these fantastic shirts and all year long. The more awareness we can bring to this silent killer, the more success we can have in preventing them. Click here to get your shirt now and GET LUCKY!

 

 

 

Brain Aneursym Awareness Night Turner Field…A Survivor’s Success!

Natalie and Phil Niekro accompanied by several Brain Aneurysm Survivors for a special pre-game ceremony.

On July 16^th, The Atlanta Braves honored one of baseball’s most renowned pitchers and former Atlanta Braves Knuckleballer, Joe Niekro.  Niekro spent 22 years in the major leagues, notching 221 wins and still holds the record, with his brother Phil, of the most successful brother combination in major league history, with 539 wins.  On October 27, 2006, Joe passed away from a sudden brain aneurysm.  Today, his legacy lives on through the Joe Niekro Foundation, committed to the awareness and funding for aneurysm research and treatment.  To honor this knuckleball legend, The Atlanta Braves hosted “Brain Aneurysm Awareness Night” at Turner Field on July 16, 2011.  President and Founder of The Joe Niekro Foundation, Joe’s daughter, Natalie and Joe’s brother, Hall of Famer Phil Niekro were joined by over 50 aneurysm survivors from the Atlanta area and medical professionals from Emory Hospital for a special pre-game on field ceremony.  From the times the gates opened to game time, fans visited The Joe Niekro Foundation booth in Monument Grove where they received a Wanna Get Lucky?t-shirt and autograph from Phil Niekro for a minimum donation of $20.

Phil Niekro Signing a Wanna Get Lucky? shirt for a very happy fan

Wanna Get Lucky? is the foundation’s national awareness initiative campaign to educate people on the importance of early detection.  In addition, throughout the game, fans were encouraged to participate in a “Text to Give” campaign by texting the word Strikeout to 20222.  By doing so the texter was making a $10 donation to The Joe Niekro Foundation.  Natalie and foundation volunteers sold Wanna Get Lucky? shirts throughout the game, plus gave text donors a commemorative Wanna Get Lucky? stress ball as a thank you for their support.  We are pleased to report that Brain Aneurysm Awareness Night was a great success for The Joe Niekro Foundation and we thank everyone for their tremendous support.

Click here to watch the video shown at Turner Field prior to the on-field ceremony.