Archive for the 'Brain Aneurysm Awareness' Category

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.

25
Feb
16

16 in Sixteen

16 in Sixteen Campaign

 

 

 

 

PLEASE PLEDGE YOUR 16!

We have all felt alone.

That moment where we would give anything to know someone else who has walked the same path.

That person who can give us the strength to make it to the other side.

When we face our greatest challenge we should not be alone!

  • There are currently 6 million people in the US who have an unruptured brain aneurysm
  • As many as 1 in 15 people will develop a brain aneurysm or AVM
  • Every 18 minutes an aneurysm ruptures
  • 50% of ruptured aneurysm patients will die instantly
  • The average age of an AVM rupture is 17 years old
  • There are approximately 120,000 hemorrhagic stroke victims annually

The Joe Niekro Foundation™ is committed to supporting patients and families, research, treatment and awareness 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.

The Joe Niekro Foundation™ Support Groups create a community to help these survivors know that recovery is possible and they are not alone.

  • These groups provide life-saving support to patients, survivors, caregivers and families, both online and in person.
  • Social support is essential to the recovery process and social isolation can greatly reduce patient recovery and outcomes after suffering a Brain Aneurysm/AVM/Hemorrhagic Stroke.
  • Many hospitals are not equipped to offer patients and families the ongoing support post discharge needed for their full recovery.
  • Survivors have the opportunity to meet and learn from other survivors who have experienced similar issues and understand.
  • Support group members learn what to expect during their healing process and develop new coping strategies through shared personal experiences.
  • Members have access to healthcare professionals as well as other survivors.
  • Our education booklet Roadmap to Recovery provides information on topics such as depression, social reintegration, coping with disabilities, nutritional brainpower, exercising your brain and much more.
  • Members feel empowered when they receive access to educational information and emotional support that directly helps lead them to improved health and quality of life.

“A support group can be life saving for a patient and family during their critical recovery period.  I have been amazed by the commitment, the diligence and camaraderie of their members.  I have been deeply impressed by the benefit my patients and their families have received by interacting with others who have survived the same ordeal.  I salute the organizers of The Joe Niekro Foundation for all the good that they do, and am deeply grateful for the benefit my patients have received because of their efforts.”

Dr. Robert F. Spetzler
Director, Barrow Neurological Institute
Chairman and President, Barrow Neurosurgical Associates
Professor of Surgery, Section of Neurosurgery, University of Arizona College of Medicine, Tucson, AZ

“It was in August 2012 and being 19, I was rushed to the hospital. They had discovered that I had a ruptured AVM and a possible stroke. While there isn’t a lot that I remember about the event, I have had to live with many difficulties including forgetfulness, struggling with talking, and my ability to participate in many activities.  It is through the Joe Niekro Foundation and their guidance that I’ve been able to meet and talk to other survivors and understand I am not alone.”

Tyler Landreth, Survivor 22 Years Old, Green, Oregon

Here’s how you can help JNF provide the critical funding necessary to offer a greater support network for survivors and caregivers worldwide:

Share the message with 16 friends and/or share the link below with friends on other social media sites, across the web and by email.

The more people we can educate, the more lives we can save.  It is our priority to create awareness and deliver guidance, knowledge and support to those facing the challenging road of diagnosis, treatment and recovery. Together, we can create this vital community where people no longer have to feel alone – they can thrive, not just survive.

Please join us and pledge or share YOUR 16 in 16!

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.

03
Sep
14

Chuck the Chicken Goes Viral

Don't be a ChickenWe are now on Day 3 of our Don’t be a Chicken Campaign in support of Brain Aneurysm/AVM Awareness Month and we want to applaud the nearly 8000 people who have jumped on board with us thus far.  We have 27 more days to go so keep up the great efforts!  Remember, this is all about spreading the importance of awareness and understanding the facts about brain aneurysms and AVMs.  So “chuck” being a chicken and hop on board with JNF as we continue to let the world know just how brave we are!!!!!

JNF

Supporting the Fighters

Admiring the Survivors

Honoring the Taken

And Never EVER Giving Up Hope!

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.

 




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