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.

 

10
Jan
16

JOE NIEKRO FOUNDATION AWARDS OVER $240,000 TOWARD BRAIN ANEURYSM, AVM AND HEMORRHAGIC STROKE RESEARCH FUNDING

Nationally recognized non-profit, The Joe Niekro Foundation™ has announced the 2015 Joe Niekro Research Grant recipients. A total of $240,000 has been awarded by the foundation, which is committed to supporting patients and families, research, treatment and awareness of brain aneurysms, AVMs and hemorrhagic strokes. “We are honored to be able to collaborate with these amazing recipients and provide them with the critical funding needed to help support the advancements of neurological research,” states JNF Founder, Natalie Niekro.

Barrow Neurological Institute, has received a $160,000 grant for the study Deconstructing the vascular tangle-A molecular biopsy of cerebral arteriovenous malformations, by Joseph Zabramski, MD and Yashar Kalani, MD. This groundbreaking study will aim to understand the pathogenesis of AVM formation and identify signaling pathways involved in vascular development and AVM formation. This is the second grant Barrow has received from The Joe Niekro Foundation™ for this study and provides the funds to cover expenses for the entire 2016 year. “On behalf of all of us at the Barrow, we want to thank you for your appreciation and continued support of this project,” states Dr. Kalani. “We are incredibly grateful to the Joe Niekro Foundation™ for their continued support and ongoing efforts to help make this collaboration a successful one,” claims Joseph Zabramski, MD.

University of Texas has been awarded a $20,224 grant for the project, Application of Machine Learning Techniques to Improve Outcomes after Aneurysmal Subarachnoid Hemorrhage, by Huimahn Alex Choi, MD MS and Jude Savarraj, PhD. The goal of this project is the realization of a machine learning model that will reliably predict the occurrence of delayed cerebral ischemia (DCI) after a Subarachnoid Hemorrhage at least 24 hours before onset, allowing enough time for a meaningful clinical intervention.

A continued partner and collaborator of The Joe Niekro Research Grant, SNIS Foundation was the recipient of a $40,000 grant. This annual grant enables investigators to conduct pilot projects related to brain aneurysms, AVMs or stroke. It is the intention of the grant that the seed data from these projects will indicate feasibility and appropriateness of the research prior to applying for further funding; therefore, emphasis will be placed on research deemed to have the most potential for future funding. “JNF is a wonderful supporter of the SNIS Foundation and we are honored to steward JNF’s resources in innovating and improving care,” says SNIS board member and UCSF Interventional Neuroradiologist, Steven Hetts, MD.

Other 2015 grant recipients included:
Crouse Hospital – Syracuse, NY
St. Joseph’s Hospital – Phoenix, AZ
Child Legacy International – Boerne, TX
Houston Methodist Hospital – Houston, TX

Since inception, the Joe Niekro Foundation has awarded over $1,00,000 in research funding and has built a patient advocacy network that expands across the globe. The foundation provides education on the causes, risk factors and treatments of these conditions, while funding the advancement of neurological research.

Click here to view the list of previously funded projects.

For more information about funding opportunities including program guidelines and contacts, visit http://www.joeniekrofoundation.com/research-grants/grant-guidelines.

 

14
Dec
15

Joe Niekro Foundation Workshop Hits the Mark

JNF shined this weekend at the 1st Annual Facilitators and Administrators workshop. Twenty four JNFMicrovention ambassadors came together for a three day workshop packed with informational, educational and engaging sessions designed to increase the overall knowledge and involvement of our Support Group leaders and hospital partners.

The Joe Niekro Foundation Support Groups and Facebook online forums provide an invaluable resource for brain aneurysm and AVM patients, caregivers and families in the community. Strong facilitation is essential for the sustainability of a support group and the motivational seminar provided the framework to empower our facilitators to be the best leaders they can be.


Me Kim and RobThe group began the weekend with a personal tour of the Microvention Plant where they were able to learn about the latest advancements within the Endovascular industry and had a hands opportunity to witness the coils, stents and flow diverters in the making. Microventions’ founder, Rob Greene wowed the group with a lunch discussion on The History of Coils, while the entire office welcomed JNF to their facilities. Outside of the Microvention tour, the group enjoyed discussions on the various ways to make their group one of the strongest in the country.

Between ice breakers and One Minute Limit challenges, the group shared their successes and learned all that is available to them through the Joe Niekro Foundation™.Team Sparkle

The weekend was truly an opportunity of a lifetime and we are so grateful.  Thanks to all who participated and made it such a memorable time together.
#JNFWorkshop2015.

01
Dec
15

Give Us A Smile

We have a day for giving thanks. We have two for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back. Today charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give.

It’s a simple idea and today is YOUR chance to make a difference! While everyone else is asking for money today, we at the Joe Niekro Foundation™ are asking for something much more priceless…a smile. We encourage you to share our smile with someone you love to help make their day a priceless one too. We know that

#GivingTuesday only lasts for 24 hours, so please be sure to share this smile with the ones you love and lets see the impact a simple gesture like this has on the world!

Thank you for your support!

Smiley Cover2

10
Nov
15

Know the Facts!


 strokeDid you know that strokes affect 1 in 6 males and 1 in 5 females? Stroke is third leading cause of death worldwide and a common cause of disability in adults.

Surprisingly, 80% of strokes are preventable.  Here are a few tips to keep in mind that could just help save you from a stroke!

1) Know your blood pressure: High blood pressure (hypertension) is one of the most common causes of stroke. High blood pressure is a measurement of 140/90 or higher.

2) Check for Heart diseases: Atrial fibrillation (AF) is an irregular heartbeat that changes how your heart works and can cause blood to pool in parts of your heart. This blood can form clots and cause a stroke.smoking

3) If you smoke, STOP! Smoking doubles the risk for stroke.

4) If you drink alcohol, do so in moderation: Heavy drinking can actually increase your risk for stroke.

diabetes-blood-sugar-chart5) Know your cholesterol number: Lowering your cholesterol (a fat-like substance in your blood) may reduce your risk for stroke. high cholesterol can be controlled with diet and exercise; some people may need medicine.

6) If you are diabetic, get your blood sugar level under control.

7) Include exercise in your daily routine: a brisk walk, bicycle ride, swim or yard work – can improve your health and may reduce your stroke risk. Adults should perform moderate physical activities for at least 30 minutes for five or more days a week.

8) Enjoy a lower sodium (salt), lower fat diet: By cutting down on salt and fat in your diet, you may lower your blood pressure and, more importantly, lower your risk for stroke. Try to eat a balanced diet each day, with plenty of fruits, vegetables, whole grains and a mod
erate amount of protein (meat, fish, eggs, milk, nuts, tofu, and some beans).

9) Ask your doctor if you have circulation (blood flow) problems, which increase your stroke risk. If so, work with your doctor to control them.

Knowing your numbers could make all the difference!

numbers

03
Nov
15

B.E. F.A.S.T. – Save a life from Stroke

In culmination of World Stroke Day, we wanted to be sure you had the tools necessary to recognize a stroke and the signs to look for.  Following these easy steps could help save a life!!!!

The B.E. F.A.S.T. guideline helps you remember that timely treatment is the key to saving someone’s life or quality of life.

B – Balance: Is the person experiencing a sudden loss of balance or coordination?

E – Eyes: Is the person having a sudden change in vision or trouble seeing

F – Face: Ask the person to smile. Does one side of the face droop?

A – Arms: Ask the person to raise both arms. Does one arm drift downward?

S – Speech: Ask the person to repeat a simple phrase. Is their speech slurred or strange?

T – Time: If you observe any of these signs, call 9-1-1 immediately.

Strokes cause about one out of every 19 deaths in the U.S. each year, making it the third leading cause of death for women and the fourth leading cause of death for men. Strokes are also a leading cause of serious long-term disability in America.

hemorrhagic-stroke

A stroke occurs when a vessel in the brain is blocked by a blood clot or ruptures, according to the American Stroke Association. About 15 percent of all strokes in the U.S. are hemorrhagic, leaving 85% to be ischemic.

The Centers for Disease Control and Prevention (CDC) says high blood pressure, heart disease, diabetes, cigarette smoking, atrial fibrillation are risk factors for stroke.

The good news, according to the CDC, is that you  can help cut your risk for stroke by:

  • Eating a healthy diet rich in fresh fruits and vegetables and low in sodium and trans fat.
  • Maintaining a healthy weight.
  • Staying physically active each day.
  • Quitting smoking.
  • Consuming alcohol in moderation.
  • Preventing or treating high cholesterol, high blood pressure, or diabetes.

If you think someone has suffered a stroke, call 9-1-1 immediately. Paramedics can begin life-saving treatment on the way to the emergency room.

11
Oct
15

Get Ready to Pitch Another Great Evening

Chairman, Natalie Niekro, of the 6th Annual Knuckle BallA Pitch for Life, on October 17th, at JW Marriott Desert Ridge, is pleased to announce some of this year’s participating athletes who will be honoring her father and former MLB pitcher, Joe Niekro while raising funds for brain aneurysm, AVM and hemorrhagic stroke research.  Attending and mingling with the guests, to name a few, will be:

  • Vince Coleman – MLB – 1985-1997 – 2x All-Star, NL Rookie of the Year and 6x Stolen Base Leader
  • Tony Phillips – MLB – 1982-1999 – World Series Champion
  • Tim Kempton – NBA – 1986-2000
  • Steven Hunter – NBA – 2001-2011
  • Nick Lowery – NFL -1978-1996
  • Steve Ontiveros – MLB – 1985-2000
  • Brandon Webb – MLB – 2003-2009 – 3x All-Star, NL Cy Young Award, 2x NL Wins Leader
  • Cassie Gannis –Nascar

Since 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 aiding in the research and treatment of brain aneurysms, AVM’s 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.

The black-tie evening, appropriately named for the pitch that made Niekro famous, will be emceed by legendary radio personality, Dave Pratt, with Special Host, Actress and Brain Aneurysm Survivor, Tamala Jones will feature a festive reception, silent auction, formal dinner, event program, LIVE auction, musical entertainment and the opportunity to mingle with some of sports greatest legends (plus a few surprises in between).  The gala, being hosted in Phoenix for the first time, 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.

Petrice “TC” Schuttler will be honored as the Joe Niekro Humanitarian of the Year for her outstanding commitment and contributions to the community and Dr. Joseph Zabramski will be recognized as the Joe Niekro Medical Humanitarian of the Year.   Proceeds from the event will benefit the Barrow Neurological Institute.

As many as one in fifteen Americans will develop a cerebral aneurysm or AVM; 10-15% of these individuals will die before reaching the hospital and over 50% will die within the first thirty days after rupture. Of those who survive, over half suffer permanent neurological deficit. For more info, visit www.joeniekrofoundation.com/events/knuckleball.




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