Posts Tagged ‘AVM

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.

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.

10
May
15

Actress Tamala Jones teams up with JNF for Brain Aneurysm Survivor Model Search

Luxury hat designer, Canada Bliss and Brain Aneurysm Survivor Tamala Jones from the ABC hit show Castle have teamed up with The Joe Niekro Foundation for The Brain Aneusym Survivor Model Search.  We are looking for brain aneurysm, AVM, and hemorrhagic stroke survivors to be featured in an upcoming national campaign for Canada Bliss.

Nearly 17 years after being diagnosed with a ruptured brain aneurysm, Tamala has made it her mission to educate children and young adults on the importance of awareness.  “If I can help one person recognize the symptoms of a brain aneurysm and get help, then I will have made a difference,” she says.  Surviving a swollen and spouted blood vessel at just 23, Jones is a prime example of this medical malfunction not just occurring in “old people.”

The search will deadline June 5, 2015 and winners will be named June 26, 2015.  Entrants must submit a 500 word or less essay about their story plus two photos.  “We are thrilled to be collaborating with Tamala, Canada Bliss and survivors across America.  This is a wonderful testament to survivors everywhere that awareness is beautiful and chic.  What an incredible day it will be when we get to witness these courageous survivors representing a platform that is so vitally important to our mission.  We are honored to be a part of this campaign,” says JNF Founder Natalie Niekro.

Contest is open to men and women 18 years and older in the US and Canada.

22
Mar
15

How Do You Know if You are Suffering from Depression?

By: Kimberly Chapman – Patient Advocacy Director/Support Group Coordinator

Recently, I had the honor of speaking with a well-known neuropsychologist. I asked him how he can tell if his patients are truly suffering from depression as opposed to the normal sad feelings a survivor might typically experience. He described the exact test he gives his patients to help determine if depression has set in:

1. You call your financial planner and tell him to invest $20,000 into a high risk investment. A week later your financial planner calls you and states all $20,000 was lost in a bad investment.
How do you feel?

2. A couple of hours later the financial planner calls back exclaiming, “Woops, I made a mistake. I meant to say you lost $5,000. You still have $15,000 left of your initial investment.”
Now, how do you feel?

The point of this experiment is to see if your emotions and feelings change between scenario #1 and #2. The depressed survivor will not find any joy or the smallest amount of relief in scenario #2. Instead, it might compound the depression even further.

Depression after having a brain aneurysm/AVM is the most common mental health disorder. In fact, I suffered from depression immediately following my ruptures. Unfortunately, my depression eventually turned into rage. Not only was this time in my life lonely but it was scary. I’ve never felt so alone and disconnected as I did when the depression took hold of me. At the time of my ruptures, there was scarcely any information or educational materials for survivors to inform themselves. No one told me that depression is a side effect from experiencing a brain aneurysm.

For those survivors that feel depression might have a hold of them, understand there is absolutely no shame in having this disorder. Please know you have the right to be upset or even mad about what has happen in your life, but it should never go beyond this. Life is not about suffering. Depression has a high cure rate and can be treated by a medical professional relatively quickly.

Anyone can give up and bury their head in the sand, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.

Although the world is full of suffering, it is also full of the overcoming of it. ~ Helen Keller

To read more on depression and coping, please click here.

18
Jan
15

JNF Awards $90,000 in Research Grants

The Joe Niekro Foundation has announced the 2014 Joe Niekro Research Grant recipients.  A total of $90,000 has been awarded by the foundation, which is committed to supporting patients and families, research, treatment and awareness of brain aneurysmsAVMs and hemorrhagic strokes.  “We are thrilled to award these recipients with this critical funding needed to help support the advancements of neurological research,” states JNF Founder, Natalie Niekro.

The first awardee, Barrow Neurological Institute, has received a seed grant in the amount of $50,000 for the study Deconstructing the vascular tangle-A molecular biopsy of cerebral arteriovenous malformations by Dr. Joseph Zabramski and Dr. Yashar Kalani.  This groundbreaking study will aim to understand the pathogenesis of AVM formation and identify signaling pathways involved in vascular development and AVM formation.

JNF Founder Natalie Niekro along with Board of Directors Members (from left to right) Bill Michels, Kimberly Chapman, Gary Simms and Linda Michels present a $50,000 research grant to Drs. Yashar Kalani and Joseph Zabramski.

JNF Founder Natalie Niekro along with Board of Directors Members (from left to right) Bill Michels, Kimberly Chapman, Gary Simms and Linda Michels present a $50,000 research grant to Drs. Yashar Kalani and Joseph Zabramski.

A $20,000 grant will go to the University of Michigan for the project, Intraventrical injection of noncellular fluid from subarachnoid hemorrhage patient leads to ventricular enlargement and periventricular injury, by Dr. Aditya Pandey.  This current project aims to understand the role of human subarachnoid hemorrhage (SAH) non-cellular cerebral spinal fluid (CSF) in causing hydrocephalus and periventricular cellular injury.

The final recipient, the SNIS Foundation who received a $20,000 award for the Joe Niekro Research 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.

Since inception, the Joe Niekro Foundation has awarded over $500,000 in research funding and has built a patient advocacy network that expands across the globe. The foundation provides education on the causes, risk factorsand 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/.




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