Posts Tagged ‘AVM

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/.

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.

 

23
Aug
14

Dr. Demetrius Lopes Joins JNF Advisory Board

The Joe Niekro Foundation is pleased to welcome Dr. Demetrius Lopes to our Medical Advisory Board.

Demetrius LopesDemetrius Klee Lopes, MD is the Section Chief of Cerebrovascular Neurosurgery at Rush University Medical Center in Chicago. He is highly skilled in endovascular surgery, microsurgery and radiosurgery of brain and spinal vascular problems. This unique set of skills allows Dr Lopes to personally provide all available vascular treatments to his patients. Dr Lopes’ practice focuses on caring for patients with complex aneurysms, arteriovenous malformations (AVM), dural arteriovenous fistulas (DAVF) carotid and vertebral-basilar blockage and stroke.  He also serves as Surgical Director of the Rush Comprehensive Stroke Center, Director of the Rush Center for Neuroendovascular Surgery, Director of Endovascular Neurosurgery Fellowship Education and Surgical Director of the Rush University Interventional Services.

Dr. Lopes began his medical education at Federal University of Rio Grande do Sul in Brazil (1987), followed by a General Surgery (PGY-1) internship at University of Illinois at Chicago and Cook County Hospital (1993) and Neurology (PGY-2) at the Indiana University (1994). He completed training in Neurosurgery and Fellowship in Neuroendovascular Surgery at State University of New York at Buffalo (1995-2001). In 2001, he was invited to head the cerebrovascular program at Rush University Medical Center in Chicago. Dr. Lopes is an active author, lecturer and researcher. He has written many articles and chapters on various aspects of cerebrovascular surgery. His current research interests are in minimally invasive repair of blood vessels (aneurysms), intravascular imaging, flow diversion, arteriovenous malformation and stroke therapies. Dr Lopes’ is the principal investigator to trials for flow diverters such as Pipeline, Surpass, Fred and Web. As well as, stents like Lvis jr and Liberty. Dr. Lopes is unsurpassed in the Chicago-area in terms of expertise, experience, multidisciplinary collaboration and access to the latest diagnostic and stroke-prevention technologies. Dr Lopes is founding member of the World Live Neurovascular Conference (WLNC).

Welcome to the JNF Family Dr. Lopes – we are excited to have you!

 

16
Aug
14

JNF Welcomes Two New Patient Advocates

Please join us in welcoming our two newest Patient Advocates, Tammy Curmano and Linda Legner-Romano.  We are excited to have you on board and thank you for your continued commitment to The Joe Niekro Foundation and our mission.

TamTammymy is a 5-year brain aneurysm survivor and extremely passionate about patient support and advocacy.  Tammy states, “I know that we make a difference in the lives of so many that feel alone.  The most important thing is having a positive, inspirational place to come for answers.  The team is here for us all, to help us through our challenges and celebrate all of our milestones!  I wish I would have known this group when I needed it the most, but now I am a part of the most compassionate and supportive team, and am extremely grateful.”  Tammy – we are so thankful for you!

On June 25, 2013, Linda Legner-Romano underwent the Pipeline procedure to treat her four brain Lindaaneuryms and today is focused on providing support to other brain aneurysm/AVM survivors and families.  A very important goal for Linda is to work together with other survivors of brain aneuryms and avms and their family members to provide the support she understands first hand is so critical. Linda will be facilitating our new Chicago Support Group at Rush University Medical Center which begins this coming Thursday, August 21st.  “We as a group of survivors can unite to support one another. Together we can understand the uniqueness of our situation and wrap our arms around each other in comfort to know we are not alone,” states Linda.

Tammy and Linda – Welcome to the JNF Family!

 




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