Posts Tagged ‘aneurysm support

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.

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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
Sep
15

It’s Time to Step Up to the Plate!

Joe Niekro FoundationIn support of Brain Aneurysm Awareness Month, The Joe Niekro Foundation™ (JNF) encourages you to “Step Up to the Plate…and Donate this September.

Step Up to the Plate…and Donate is designed to increase awareness of brain aneurysms and AVMs (Arteriovenous Malformation) through the eyes of survivors, caregivers, friends and families who will be sharing their own stories in attempt to educate the public on the warning signs and risk factors of brain aneurysms and AVMs.

To take the Step Up to the Plate challenge, participants will be directed to the JNF Step Up to the Plate donation page.  Anyone interested in creating their own pledge page, or forming a team where they can share their story with others, provide education to the public and create hope for patients and families across the globe, may also do so.  Funds will benefit brain aneurysm and AVM awareness programs through The Joe Niekro Foundation.

There’s nothing quite as appealing as the sound of the words, “You’ve just won a prize!”  So, to show  support for all efforts, the JNF will be awarding Visa gift cards to the Top 3 earners. First place will receive $750, $350 will go to the 2nd place earner and $100 for 3rd place. *Note, no funds from this campaign will be used for the awarded prizes.

The coin has been tossed, the players are ready and the game has begun so, Step Up to the Plate this month for brain aneurysm and AVM awareness.

It is estimated that 6 million people in the US have a brain aneurysm (1 in 50 people).  Every eighteen 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.

“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 it’s too late.  Survivors need a platform to share hope with others and we are so fortunate that we are the outlet for them to do so,” says JNF Founder Natalie Niekro.

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.




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