Posts Tagged ‘brain aneurysms

13
Sep
16

JNF Elevates Brain Aneurysm Awareness This September

September is Brain Aneurysm Awareness Month and to help provide insight as well as spread awareness of this condition, The Joe Niekro Foundation™ is sharing daily facts about the brain and brain aneurysms, helpful tips for brain aneurysm survivors, as well as other important information through their social media channels which include Facebook, Twitter, Instagram, Pinterest and Google Plus.

The foundation is also offering a 25% discount on all of their JNF Jewels awareness bracelets and necklaces through the end of the month as well as co-hosting their first annual A Cerebral Affair gala in New York City on September 29th. In addition to their efforts in September, The Joe Niekro Foundation™ will be hosting their annual Knuckleball Gala in Houston, TX on October 20th and their annual Phoenix Knuckleball Gala on November 12th.

Funds raised at the events will go towards brain aneurysm, AVM and hemorrhagic stroke research and awareness supporting The Joe Niekro Foundation’s Patient Advocacy Program as well as the local medical communities.

28
Jan
16

The World as We See It

by: Kimberly Chapman – Brain Aneurysm Survivor

Dear World,

It happens time and time again, a voice echoes loudly within our heads reminding us we are not like you and the outside world views us as different or difficult.  There is no one course of action that a survivor “should take” or a specific way that a survivor “should act” during the recovery process. There are, however, some important things to keep in mind when offering support to a brain aneurysm/avm survivor.

12552833_10208150912159896_4615159395398165507_n1. THE RECOVERY PROCESS NEVER ENDS.

There will never come a time when I forget that an aneurysm entered my life.  Telling me to “move on” or “get over it” never makes me want to embrace myself or the brain aneurysm.  Recovery is a slow process and there are no vacations while I try to learn to navigate through this new life I’ve been given.   I understand my aneurysm didn’t happen to be a death sentence, but instead that it has become a life sentence.  The healing process will never end and it takes a long time before both the heart and mind are on the same track. Moving from healthy person to survivor has been a life changing process, it has transformed how I view and accept the world.  It scratched my lens of perception, landing me into a deeper sense of living.

12494662_10208177688749294_3474789907686182811_n2. SURVIVORS SHARE AN UNSPEAKABLE BOND.

In my 12 years of navigating the world as a brain aneurysm survivor, I am continually struck by the power of the bond between survivors. Our condition connects us and we become friends in mere seconds, even if we’ve never met before. No matter who we are, or how different we are, there is no greater bond than the connection between survivors. It’s a recovery journey for an entire lifetime, and unfortunately only those who have walked our path understand the depth of our pain and pride we carry at the same time.  Being a survivor means I’m part of a club that I can never leave, one that  is full of the most caring souls I’ve ever known.

12509734_10208137958836071_7284252180242417994_n3. I WILL BE A SURVIVOR FOR THE REST OF MY LIFE.

Period.  The end.  There is no “moving on,” or “getting over it.”  I wish people could understand the day my rupture occurred was the day I started fighting for my life.  My aneurysm was not a one time event….it was an event that will last a lifetime.  I’ve become a member of the club called “brain aneurysm/avm survivors” and it’s a club I didn’t apply to join… nor one I can ever leave.  Every single member wishes we’d met some other way, any other but this.  The members are the most beautiful, caring, loving, compassionate people I’ve ever known.  They are the ones changing the way the public views brain surgery and putting an exclamation point at the end of our awareness campaign.

983655_10208069039993143_1648867012181199466_n4. NO MATTER HOW LONG IT’S BEEN, I STILL DESIRE MY OLD SELF BACK. I WILL GRIEVE A LIFETIME FOR HER.

There are great days and then there are the not so good days.  Compassion, love, and understanding are what’s needed- not advice or a lecture on how I was so lucky to have survived.  I miss the prior me and I realize there is no going back.  There will never come a time when I won’t think about what I would be if the brain aneurysm hadn’t entered my life.  It took me a long to build that girl before the rupture and it may take me a lifetime to let her go.   The length of grieving time over prior self is different for each of the club members, but every person will face a life changing moment when they realize they can’t continue down the pathway of “prior self” and must take that fork in the road towards rebuilding.

1526527_10208059758881121_8080642560998311422_n5. THE CAUSE NEVER BECOMES LONELY.

Every day another person joins our club.  Every day another survivor gets upset about how our cause is not known.  They are the ones who spearhead awareness campaigns or launch a crusade of involvement.  They do this in the hopes of saving another person from ever having to join our club.  Curious to who the movers and shakers are in this cause?  Look for the survivors who are turning their tragedy into a triumph.  They’ve transformed their pain into a force to make a difference.   They are the ones who have figured out that if they stop crying, they can be strong and create a movement.

10014930_10208051692439465_6879369758593637242_n6. BECAUSE I KNOW DEEP PAIN, I ALSO KNOW UNSPEAKABLE JOY.

Even though I may be in recovery for a lifetime, grieving my prior self doesn’t mean my life is void of happiness, love, and enjoyment.   I don’t have to choose between grieving my prior self or happiness.  In this situation, grieving and happiness can cohabitate.  My life is more enriched now that I have experienced a brain aneurysm.  I now think from a deeper place and love from a fuller heart.  Due to the fact that I’ve experienced pain, sorrow, and fear my joy comes from a place of pureness and what is essential to live for.

 

16
Jul
15

The Knuckle Ball…A Pitch for Life is Heading to Phoenix

Joe Niekro Foundation Knuckle Ball

On October 17th, 2015, athletes from all over the country will come together, in association with The Joe Niekro Foundation and The Society of Neuro-Interventional Surgery Foundation, to support brain aneurysmAVM and hemorrhagic stroke research and awareness, for the 6thAnnual Knuckle Ball…A Pitch for Life at the JW Marriott Resort in Phoenix, AZ.

The black-tie evening, hosted by actress and brain aneurysm survivor, Tamala Jones, will feature a festive reception, silent auction, formal dinner, event program and LIVE auction (plus a few surprises in between).  The gala is the foundation’s largest event of the year and pays tribute to those that have lost their lives to these fatal conditions, while honoring the survivors who are fighting everyday to recover.

We are proud to announce that Petrice “TC” Schuttler will be honored as the Joe Niekro Humanitarian of the Year for her outstanding commitment and contributions to the Phoenix community.  Petrice has devoted her life to improving the lives of others and we are incredibly excited to present her with this year’s award.  The Joe Niekro Foundation Medical Humanitarian of the Year recipient, Joseph Zabramski, MD will be recognized for his research and continued advancements and treatment studies of brain aneurysms, AVMs and hemorrhagic strokes.

Since her father’s tragic and sudden death as a result of a brain aneurysm, Natalie Niekro established The Joe Niekro Foundation, committed to supporting patients and families, research, and treatment of brain aneurysms, AVMs and hemorrhagic strokes. We provide education on the risk factors, causes and treatments of these conditions, while funding the advancement of neurological research.

We would be honored to have you join our efforts and look forward to welcoming you at the 6th Annual Knuckle Ball…A Pitch for Life.

For tickets and package information, visit www.joeniekrofoundation.com/events/knuckleball.

04
Jun
15

Legends of the Game Coming Together to Support JNF

Two decades of baseball champions will come together on June 11th to host World Series Legends, benefitting The Joe Niekro Foundation (JNF). Members of the 1968 and 1984 World Series Detroit Tigers will be at Motor City Casino, in Detroit, Michigan to support brain aneurysmAVM and hemorrhagic stroke research and awareness.

The evening, emceed by sports broadcaster Eli Zaret, will include a cocktail reception, strolling dinner and culminate with a panel discussion including some of the greatest legends of the game: Al Kaline, Willie Horton, Mickey Lolich, Jack Morris, Alan Trammell and Lou Whitaker. Other Tigers guests will include Rick Leach, Scott Lusader, Dan Petry, Dave Rozema, Pat Sheridan, Jon Warden and Pio DiSalvo.

Tiger fans everywhere are invited to attend. Tickets can be purchased online here.

One Champion who will greatly be missed this year is former Tiger and JNF Chairman of the Board, Dave Bergman. Bergman lost his life this past February and to recognize him and his philanthropic efforts, a tribute will be made in his honor during the dinner. “Both Dave and Joe were great friends of mine and I am very glad to be a part of this event and honor their memory”, says Hall of Fame great Al Kaline.

After former Tiger Joe Niekro’s tragic and sudden death in 2006 as a result of a brain aneurysm, his daughter Natalie established The Joe Niekro Foundation, committed to supporting patients and families, research, treatment and awareness of brain aneurysms, AVM’s and hemorrhagic strokes. The foundation strives to raise awareness about the risk factorscauses and treatments of these conditions, while helping support the advancement of neurological research.

Joe Niekro was one of the approximately 30,000 Americans to experience a brain aneurysm that bursts, usually resulting in sudden death. It is estimated that 6 million people in the US have a brain aneurysm, as many as one in 50 people, and every 18 minutes a brain aneurysm ruptures.

World Series Legends promises to be a memorable event, with some of the greatest names in baseball together in one place. The event begins at 5:30pm with a VIP Tiger Legends cocktail reception for premium ticket holders.

Tickets can be purchased at JoeNiekroFoundation.org or call 602-318-1013.

01
Sep
14

Don’t be a Chicken!!!

In support of BrDon't be a Chickenain Aneurysm Awareness Month (September), The Joe Niekro Foundation (JNF) encourages you to “Don’t be a Chicken.”

Brave survivors of brain aneurysms/AVMs and hemorrhagic strokes will represent The Joe Niekro Foundation during a month of mini-challenges to bring awareness to the importance of early detection and “Getting Scanned.” Don’t be a Chicken is designed to increase awareness of these devastating conditions by asking survivors, caregivers, friends and families to share their stories in attempt to educate the public on the warning signs and risk factors of a brain aneurysm and what to do if you experience “the worst headache of your life.” Courageous survivors and family members from across the country have come together to educate others on the importance of early detection and will be sharing their stories on the RUChickenJNF You Tube Channel, as well as across the foundation’s social media networks.

Plan to see quite a bit of the campaign’s mascot, “Chuck the Chicken” as the JNF will encourage individuals to make Chuck their Facebook profile picture. Signs of Chuck the Chicken have been created for survivors and supporters to download from the foundation’s website and Facebook page, take their picture with and then upload to social media. Throughout the month, Chuck will introduce new elements of the campaign and new challenges for the followers to participate in.

The Joe Niekro Foundation was founded by Natalie Niekro, daughter of the late knuckleball pitcher Joe Niekro, who lost his life to a brain aneurysm in October 2006. The foundation is committed to supporting patients and aiding in the research, treatment and awareness of Brain Aneurysms, AVMs and Hemorrhagic Strokes. The goal of the JNF is to raise awareness about the risk factors, causes and treatments of these conditions, while helping support the advancement of neurological research.  They provide public education and advocacy, support for patients and families, and develop awareness programs and educational materials for hospitals, clinics and other institutions nationwide.

It is estimated that 6 million people in the US have a brain aneurysm (1 in 50 people). Every eight minutes an aneurysm ruptures; killing 50% of those victims within minutes. Of the remaining half, 50% will suffer a delayed death and those remaining will usually suffer severe brain deficits.

One in every 200-500 people has a brain AVM; a dangerous, complex tangle of abnormal arteries and veins. Often the AVM ruptures and bleeds, causing severe brain deficits and sometimes death. The peak age for AVM hemorrhage is the late teens (age 15-20), but an AVM can rupture at any age.

Hemorrhagic strokes make up about 15% of all strokes, resulting in nearly one quarter of all deaths caused by or related to strokes. Approximately 10-15% of people who have this type of stroke will die before reaching the hospital.

“It’s important that we bring awareness to these silent killers and educate the public on the warning signs and risk factors associated with them. Far too many innocent lives are taken each year as a result of one of these conditions and we are here to help educate others before its too late,” says JNF Founder, Natalie Niekro.

Don’t be a Chicken kicks off September 1st . Follow the results at #RUchicken and #JNF or visit www.joeniekrofoundation.org.

For more information on The Joe Niekro Foundation, contact Natalie Niekro – nniekro@joeniekrofoundation.org.

 

27
Aug
14

Minnesota Twins to Host Brain Aneurysm Awareness Day

In honor of Brain Aneurysm Awareness Month, The Minnesota Twins will pay tribute to one of baseball’s most renowned pitchers and former Minnesota Twins Knuckleballer, Joe Niekro by hosting Brain Aneurysm Awareness Day on September 4th. 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 supporting patients and aiding in the research, treatment and awareness of Brain Aneurysms, AVMs and Hemorrhagic Strokes. The foundation strives to raise awareness about the risk factors, causes and treatments of these conditions, while helping support the advancement of neurological research.  JNF provides public education and advocacy, support for patients and families, and develops awareness programs and educational materials for hospitals, clinics and other institutions nationwide. Attending the day will be, Founder of The Joe Niekro Foundation, Joe’s daughter, Natalie, representatives from Abbott Northwestern Hospital and Stryker Neurovascular, along with several brain aneurysm/AVM/stroke survivors and family members. The group will be recognized during a special on-field ceremony before the game and will enjoy the game immediately following. An informational booth with literature on these conditions and the foundation will be set up on the main concourse during the game for anyone interested in stopping by.

If you would like to help or find out more about the foundation, visit www.joeniekrofoundation.org.

Natalie Niekro – Founder – The Joe Niekro Foundation – 602-318-1013 nniekro@joeniekrofoundation.org

21
Aug
14

JNF Welcomes Two New Advisory Members

The Joe Niekro Foundation is excited to announce our newest Medical Advisory Board Members, Dr. Peter Rasmussen of Cleveland Clinic and Dr. Aman Patel of Massachusetts General Hospital.

Aman Patel, MDDr. Patel, MD is a neurosurgical attending at Massachusetts General Hospital with clinical interests in cerebrovascular and endovascular neurosurgery with a focus on the treatment of cerebral aneurysms, vascular malformations and stroke. Prior to Mass General, Dr. Patel was Full Professor of Neurosurgery and Radiology, Director Cerebrovascular/ Endovascular Neurosurgery, Co-Director Stroke Program and Vice-Chairman Department of Neurosurgery at Mount Sinai School of Medicine in New York.  He started the program 13 years ago after completing post-graduate training in neurosurgery and interventional neuroradiology with a focus on the care of patients with cerebrovascular disease across the specialties of neurosurgery, radiology and neurology. This collaborative approach has led to the growth of the program to becoming one of the busiest centers in New York City.

An expert in the vasculature of the brain and spine, Dr. Patel offers both endovascular and open microsurgical options to patients. He specializes in the minimally invasive treatment of brain and spinal disorders using endovascular techniques that are creating new treatment options for a broad range of conditions, replacing long and difficult traditional surgeries with low-risk interventions. When indicated, he also performs open surgery for cerebrovascular disease and general neurosurgery.

Dr. Patel is involved in multiple multi-center studies, NIH and industry sponsored, that investigate treatments related to ischemic stroke, hemorrhagic stroke, new devices and new techniques.  He is focused on cerebrovascular treatments with a goal of developing a world-class program at Mass General that advances the clinical, academic, research and education work that began at Mount Sinai, with a goal of adding additional basic and clinical research.

RasmussenPeter Rasmussen, MD is Director of the Cerebrovascular Center at the Cleveland Clinic in Cleveland, Ohio, and the Medical Director of Distance Health. Dr. Rasmussen’s clinical interests are in hemorrhagic and ischemic stroke, primarily focusing on cerebral aneurysms, arteriovenous malformations and occlusive intracranial atherosclerotic disease. He maintains a busy practice offering patients either open microsurgery or endovascular, minimally invasive treatment options. He is a graduate of the University of Wisconsin Medical School in Madison, Wisconsin, completed his residency in neurosurgery at the University of Wisconsin in Madison, completed fellowship training in interventional neuroradiology/endovascular neurosurgery at the Cleveland Clinic Foundation, as well as a fellowship in microsurgical treatment of cerebrovascular disease also at the Cleveland Clinic. He joined the faculty at the Cleveland Clinic in 2000. He has authored numerous scientific papers and book chapters. Currently he is an ad hoc reviewer for the Journal of Neurosurgery, Neurosurgery, Journal of Neurointerventional Surgery and American Journal of Neuroradiology. During his career, Dr. Rasmussen has maintained an active interest in applied or translational research acting as the Co-Director of the Endovascular Neurosurgery Research Laboratory. He is an active member of many professional organizations including the American Association of Neurological Surgeons, Society of NeuroInterventional Surgery, and the Joint Sections on Neurotrauma, Critical Care and Cerebrovascular Surgery.
Dr. Rasmussen is the President of the Society of NeuroInterventional Surgery (SNIS), is a past Vice Chair of the American Association of Neurological Surgeons/Congress of Neurological Surgeons, Cerebrovascular Section, and has been appointed as a fellow to both the American Heart Association (FAHA) and the American Association of Neurological Surgeons (FAANS).

We are thrilled to have these two amazing surgeons join our family!  Thank you for your commitment to The Joe Niekro Foundation!




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