Posts Tagged ‘AVM

01
Aug
16

JNF Awards $60,000 at 2016 SNIS Annual Meeting

The Joe Niekro Foundation was pleased to award $60,000 in research seed grants at the 2016 SNIS Annual Meeting in Boston this July. Among a pool of thirteen amazing applications, the Grants Review Board selected three to each receive a $20,000 seed grant that advances the study of brain aneurysms or brain arteriovenous malformations. The grants enable investigators to conduct research projects that address a specific hypotheses and generate preliminary data in preparation for major grant applications to corporations, foundations and governmental agencies. Founder of the Joe Niekro Foundation, Natalie Niekro and Treasurer of the SNIS Foundation, Richard Klucznik, MD presented each recipient with their checks.
We applaud all those that applied and look forward to granting additional dollars at the 2017 Annual Meeting in Colorado Springs in July.

IMG_1050

This year’s recipients were:

Christopher Kellner, MD (left) – Fellow, Mount Sinai Hospital – “The Intra-Arterial Delivery of Modified Human Endothelial Progenitor Cells to Treat Cerebral Vasospasm Through the LArginine/NO Pathway in the Human Placenta Flow Model”

Cameron McDougall, MD (right) – Fellow, University of Texas Southwestern – “Next Joe Niekro Research GrantGeneration Bran Arteriovenous Malformation Model”

Alim Mitha, MD – University of Calgary – “Intravenous Mesenchymal Stem Cell Therapy for Aneurysm Formation”

(Dr. Mitha was unable to attend the meeting and therefore not pictured.

Congratulations to Drs. Kellner, McDougall and Mitha from all of us at the Joe Niekro Foundation™!

20
Apr
16

Should I Get a Second Opinion?

“What should I look for in a Neurosurgeon or Interventional Radiologist?” This is a common question many patients have as they are gaining more knowledge, and it is an answer people need to decide for themselves.  As you seek out medical advice for your care, always remember it is every patient’s right to feel comfortable with his or her decision.

For some patients that may mean only one opinion, but others benefit from a diversity of opinions or providers.  It is important for patients and caregivers to truly understand their options, and it is the responsibility of health care providers to be honest and forthcoming of medical options. Never hesitate to seek out a second or even third opinion; the more providers who look at your case, the more information you will have to determine the best decision.

Should you trust an online review when seeking out another physician? Always consider the source. Patients need to interpret online reviews in a balanced and thoughtful way.  Misunderstanding a doctor review can be a serious detriment.

The best decision is made from the patient who is well-informed.  Here are some questions that may be beneficial for you to ask when speaking to a physician about your case:

  • What is your experience with aneurysms/AVMs?
  • Where was your training and education?
  • How many aneurysm/AVM procedures do you perform in a year?
  • May I have a copy of your curriculum vitae (CV)?
  • What is your complication rate?  What is the national average?
  • What hospital(s) are you affiliated with?
  • How long will I ave to wait for an appointment after I call?
  • If I call with a question, what is the turnaround time for a response?
  • Who covers for you while you are away?

By obtaining a second opinion, you help ensure that you have been diagnosed appropriately and that you will receive the most appropriate and optimal treatment plan. This can provide you with significant reassurance, peace of mind and confidence that you are making the best choice for your health.

Remember to always check with your health insurer on their policy for second and third opinions.

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.

 

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.

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.

01
Aug
15

Questions to Ask AFTER Surgery

Now that you are through your surgery and ready for your first post-op appointment, here are a few questions you will want to be sure and ask:

  • What possible side effects should I look for after treatment?
  • What are the signs of infection?
  • What do I do about constipation?
  • What kind of timeframe am I looking at for recovery?
  • Is it possible to completely recover from treatment of a Brain aneurysm/AVM/Stroke?
  • What activities am I allowed to do?
  • What medications am I allowed to take?
  • Am I permitted to drive?
  • Can I drink alcohol?
  • Can I have sex and when?
  • Can I dye my hair?
  • What other types of doctors do you recommend I see? Do I need to schedule an appointment with a Neurologist, Neurophysiologist, Neuropsychiatrist?
  • How can I help myself recover?
  • Who do I call if I have questions about how I am feeling?
  • Will there be any follow-up after treatment?
  • I am nervous about the hardware that will be used to treat my brain aneurysm; if I bump my head will the coils/clips come undone?
  • What is DVT (deep vein thrombosis)? What are the symptoms?
  • Am I allowed to leave the country?
  • Can I fly in an airplane?
  • Are there support groups available?

Remember that no question is a bad question – so ask whatever you need to put your mind at ease, comfort your heart and walk away feeling some sense of relief.




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