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.


JNF Medical Advisory Member, Dr. Joshua Hirsch named Top Doc

May 1, 2015 5:47 p.m.

Name: Joshua A. Hirsch
Hospital Affiliation: Massachusetts General Hospital
Title: Director of Interventional Neuroradiology, Co-Director of Neuroendovascular Program, Chief of NeuroInterventional Spine Service, Associate Professor at Harvard Medical School
Field: Interventional Radiology
Specialty: Interventional Neuroradiology

Did you always want to be a doctor? What led you to pursue medicine?
I decided to become a doctor when I was 11. I was in Israel with my father and saw some of the amazing work that surgeons were doing. I was impressed by the impact medicine could have on people’s lives.

What has your journey been like to get to where you are today?
I went to the University of Pennsylvania for medical school. When I graduated, I was actually one of the youngest graduates since the 18th century. I completed both my residency and my first fellowship in Philadelphia and then came up to Boston and worked at the Lahey Hospital’s Neurovascular Center for my second fellowship in interventional neuroradiology. I worked at Beth Israel Deaconess Medical Center for a couple of years after that and then moved to Mass General in 2003 as the director of the neurovascular program. This has been a funny journey for me. I started as a young medical student and now, 24 years later, I feel like I am becoming an old man. But having embraced this field of interventional neuroradiology for so long and to think about where we are going in the future is still very exciting.How did you come to choose your specialty?
I was a young man in medical school and was impressed by the innovation in interventional neuroradiology and the opportunity to make a really fundamental impact in patient care. It really grabbed my attention and I knew pretty early on that this is what I wanted to do.

How has the field changed since you started?
The techniques are getting more and more powerful. We are fundamentally image guided in our treatments which means we do not use a big opening like you would in surgery. Instead, we use a tiny opening and allow imaging to precisely guide us. So the fact that the imaging technology has advanced so much in such a short period of time allows us to care for conditions that were too difficult to treat before.

Minimally invasive procedures seem to be a growing trend in medicine recently. Could you explain what their benefits are compared to those of their traditional counterparts?
When you are doing surgery, the bigger the incision, the longer you have to recover to be where you want to be. So the trend in a lot of different places in medicine is going toward minimally invasive procedures. The healing of the tissues is then much easier and the risks that you have are potentially less.

You have also published on topics such as socioeconomic issues and health policy. What led you to be so passionate about these issues?
I was, like many other doctors, just excited about the mechanics of what I do. The thing was, I kept hearing about these changes in health care and I felt that physicians were allowing themselves to become marginalized regarding how we ought to be delivering health care in the future. And what I found when I began to publish on this was that there was actually a real appetite from people for articles on those subjects.

I have actually recorded a fairly substantial number of podcasts on a variety of medical topics and I am proud to say that the most downloaded podcast is on the Affordable Care Act. It is so gratifying to see that what used to be an esoteric interest of the community is now a part of the mainstream.

So I started learning about it out of an interest in bettering myself, but I realized that there is an opportunity to actually more broadly educate the medical community about issues that they ought to be centrally interested in.

What is on the horizon for you in the future?
To continue to strive these kinds of minimally invasive, image-guided therapies to a broader cadre of patients. What we didn’t even imagine was possible a decade ago is now not only possible but is now the standard of care. And when I think about the future, it is just fantastic to think about the cutting edge therapy that takes these hard diseases and makes them so treatable.



JNF Adds Caregiver Support Group

A strong support network is an important part of adjusting to living with a newly diagnosed brain aneurysm/AVM or hemorrhagic stroke patient. Most hospitals do not offer patients and families ongoing support and rehabilitation for these conditions post discharge. It is The Joe Niekro Foundation’s goal to empower members by offering information and emotional support. This forum of mutual acceptance, understanding can play a vital role for caregivers by providing emotional and moral support.

Being a family caregiver can be challenging and you will find yourself facing a host of new responsibilities, many of which are unfamiliar or intimidating. During this time, you will likely experience feelings of anger, frustration, guilt, regret, hope, isolation and exhaustion. These are all normal stages of recovery and you must remember that you are not alone and help is available.  We understand that becoming a caregiver is often an unexpected and overwhelming responsibility, so we are here to help you through this new chapter of your life.

The JNF is excited to announce our new Caregiver Support Page.  The page was created for caregivers to turn to others with similar issues in attempt to deal with their isolation, powerlessness, alienation and the feelings they believe nobody understands. This chat room is a safe haven to be among other caregivers or family members in similar situations to express fears, challenges, successes and failures in an atmosphere in which everyone is loved and accepted by all. This new online group joins the following other support networks provided by JNF:

Brain Aneurysm/AVM/Stroke Support Group –


Parents of Brain Aneurysm/AVM/Stroke Children Support Group –


Young Adult/Teen Aneurysm/AVM/Stroke Support Group –


We encourage you to visit any of our groups and become part of the JNF family support network. The sense of shared experience is worth participating in an online and/or in person support group. When you meet/chat with others who have endured the same struggle or have suffered the same health conditions, you’re encouraged. You discover your issues are not unique. Other people understand exactly what you’re going through. You’re one of a group, rather than one of a kind.

“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 is estimated that 6 million people in the US have a brain aneurysm.

-As many as 1 in 15 people will develop a brain aneurysm or an arteriovenous malformation (AVM).

-Every 18 minutes an aneurysm ruptures.

-50% of ruptured aneurysm patients will die within minutes. Of the remaining half, 50% will suffer a delayed death and those remaining will usually suffer severe brain deficits.

-Brain aneurysms are most prevalent in people ages 35-60, but can occur in children as well.

-Women, more than men, suffer from brain aneurysms at a ratio of 3:2.

If a Brain Aneurysm/AVM/Hemorrhagic Stroke support group does not exist in your area and you are interested in starting one, please contact: Kimberly@joeniekrofoundation.org.


Swedish Medical Center Testing New Brain Aneurysm Treatment Technology

Joe Niekro Foundation Medical Advisory Board Member, Dr. Donald Frei of Swedish Medical Center, is leading the study of an investigation device called WEB to treat brain aneurysms. Swedish is one of the 20 sites across the country doing trials on this new technology.

The device is already approved in Europe, and doctors just put it into the first patient in Colorado.

“Brain Aneurysms are deadly, and if we can come up with better and safer and more effective ways of treating brain aneurysms, we absolutely should do that,” said Dr. Don Frei with Radiology Imaging Associates.

The new technology is a tiny metal mesh sphere that expands inside the artery to seal of the aneurysm. It  is a revolutionary treatment for challenging ruptured and unruptured aneurysms. The initiation of the WEB study represents an important milestone for this exciting technology platform and a critical step towards improving outcomes in a patient population with significant unmet needs.

The idea — if blood can’t get in, it can’t rupture.

“We have no idea if this device is going to be better than what’s out there already and that’s what the study is going to try to find out,” said Frei.

The study will enroll 139 patients at hospitals across the United States and in Canada and Europe.


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.



Written by JNF Medical Advisory Board Member – Dr. Michael Chen of Rush University

More common than ruptured brain aneurysms, and still involving brain blood vessels, is ischemic stroke.  A blockage of a major blood vessel in the brain can cause a range of neurological problems and disabilities depending on what part of the brain is deprived of blood. The severity of the stroke and disability depends on the size and location of the blockage. Fortunately, new evidence from multiple stroke studies published in the New England Journal of Medicine, from the US, Canada, the Netherlands and Australia show convincing, statistically robust evidence that those patients who have these emergent large vessel occlusions (ELVO) within the first few hours after symptom onset, do much better if they undergo an interventional procedure to remove the clot.

Much like the procedure involved with placing endovascular coils or flow-diverters for brain aneurysms, there are also devices that are used within a patient’s arteries that can remove clots. These devices have been in use for over 10 years, and the most recent design iterations such as the stent-triever have shown favorable performance. Performance is measured in how complete blood flow restoration to the previously affected brain region can be achieved.

This treatment is not for every stroke patient. Patients with less severe neurologic deficits such as slight face and arm numbness and weakness without additional symptoms, likely have only a small blood vessel affected and should make a favorable recovery spontaneously. Those patients who do have large blood vessel occlusions sometimes have poor brain vascular reserve and the affected brain undergoes irreversible injury very rapidly (within minutes) would also not benefit from interventional blood flow restoration. It is really those patients who have severe deficits who still have brain tissue that is “holding its breath.” The brain tissue is stunned, but not irreversibly injured yet. Flow restoration in these cases can prevent progression to irreversible injury and restore the function that brain region was responsible for.

Much of our focus now is how to effectively deliver this proven treatment for a population of patients that are in real need for an effective therapy. It’s no use to have a proven therapy but no effective system in which to deliver it. Because time is so critical, well-designed and highly dedicated teams and systems are required to achieve favorable clinical outcomes. Many comprehensive stroke centers are investing resources in creating efficient internal workflows that can coordinate multiple services to function nearly simultaneously. Just as important is shortening the times by which a patient develops a symptom and arrives to the hospital. Stroke awareness, particularly how to recognize severe strokes caused by an ELVO, by first responders may hopefully lead to preferential triage of these patients to comprehensive stroke centers, saving hours that might be spent at a hospital that doesn’t provide these types of therapies.



WASHINGTON, DC – February 11, 2015 – Two new clinical trials on the treatment of stroke (ESCAPE and EXTEND IA) demonstrate that neurointerventional surgery significantly increases the number of patients who are able to live independently without major neurological disabilities. The ESCAPE study, published today in the New England Journal of Medicine, also shows that neurointerventional surgery reduces stroke mortality by 50 percent.

ESCAPE (Endovascular treatment for Small Core and Anterior circulation Proximal occasion with Emphasis on minimizing CT to recanalization times) and EXTEND IA (Extending the Time for Thrombolysis in Emergency Neurological Deficits – Intra-Arterial) are two of three studies (together with SWIFT PRIME) that confirm the MR CLEAN study published in the New England Journal of Medicine late last year—which showed that the addition of inside-the-artery clot removal is more effective than IV-administered “clot-busting” tissue plasminogen activator (IV-tPA) treatment alone for the treatment of stroke.

“All three of these studies confirm what we are seeing in everyday practice. In many cases, instead of suffering major neurological disability, patients are able to go home to resume their lives,” said Dr. Peter Rasmussen, director of the Cerebrovascular Center, Cleveland Clinic in Cleveland, Ohio, and president of the Society of NeuroInterventional Surgery (SNIS). “Within-the-artery procedures, which are performed by neurointerventional surgeons, are not the appropriate treatment for every patient suffering from stroke, but for those patients experiencing the most severe types of ischemic strokes, they are life-saving, viable and effective therapies that offer many benefits over traditional treatments, including shorter recovery times and a better chance to return to normal activities.”

ESCAPE is the first study to show that the overall stroke mortality rate was reduced by 50 percent with neurointerventional surgery, from two in 10 patients for standard-of-care treatment to one in 10. ESCAPE and EXTEND IA showed better outcomes for those patients treated with neurointerventional surgery. In ESCAPE, nearly 30 percent of patients treated with IV-tPA treatment alone were able to live independently without major neurological disabilities. For patients receiving neurointerventional surgery, that number increased to 53 percent. EXTEND IA showed even better results, with 71 percent of patients who received neurointerventional surgery returning to independent living, compared with 40 percent in the standard treatment group.

According to Dr. Peter Mitchell, co-principal investigator of EXTEND IA and the director of neurointervention at the Royal Melbourne Hospital, two of the key differences in better outcomes for stroke patients were the use of more advanced brain imaging to select patients most likely to benefit and earlier treatment. The Royal Melbourne Hospital, where the EXTEND IA study was conducted, treats approximately 500 ischemic stroke patients a year and is one of the few stroke centers in the world to treat patients within 20 minutes of arriving in the emergency department.

According to Dr. Donald Frei, a neurointerventional surgeon at Radiology Imaging Associates in Denver, Colo., and president-elect of SNIS, treatment time is critical. While ESCAPE showed that neurointerventional surgery can be performed up to 12 hours from the onset of stroke, the success of the trial can be credited to fast treatment and the use of brain and blood vessel imaging. In ESCAPE, researchers were on average two hours faster in opening the blocked blood vessels than in previously reported trials.

“These positive studies are important milestones in the transformation of care for stroke patients, but it’s also important to understand that the comprehensive stroke centers that participated excel in providing this type care,” said Dr. Frei. “The results may not be replicable in every hospital. It’s important that when stroke occurs, the disease is identified quickly and patients are transported to facilities that are equipped to provide the best evidence-based interventions for ischemic and hemorrhagic stroke management.”

ESCAPE included 22 sites worldwide and patients in the U.S., U.K., Ireland and South Korea and evaluated the effect of endovascular treatment for patients with acute ischemic stroke caused by a clot obstructing one of the major intracranial arteries. The study was ended early because it crossed the pre-specified boundary for efficacy. The study included 316 patients who fit the criteria for neurointerventional surgery and arrived for treatment within 12 hours of their stroke who were randomized to standard medical care (which included the IV-tPA where appropriate) or standard medical care plus neurointerventional surgery.

The EXTEND IA trial compared IV-tPA to IV-tPA and neurointerventional surgery in patients with acute ischemic stroke receiving IV therapy within 4.5 hours of stroke onset. Patients were selected using CTA and CTP to identify those with large vessel occlusion and small core infarct with significant volume of “threatened” tissue. The trial was stopped early because of efficacy when 70 of the intended 100 patients had been randomized (35 to each arm) after the presentation of the MR CLEAN results prompted the DSMB to perform a pre-specified analysis.

Of 695,000 people who suffer acute ischemic stroke in the U.S., 40 percent have a large-vessel blockage, which often leads to death or permanent disability. These neurointerventional procedures have potential life-saving benefits for almost 300,000 people in the U.S. who suffer a stroke with a large vessel blockage. Stroke is the leading cause of disability and the fourth cause of death in U.S. In 2010, stroke cost the U.S. an estimated $54 billion, including the cost of health care services, medications and missed days of work. Strokes cost $74 billion in health care expenditures annually for treatment due to disability.

Neurointerventional surgery is a critical piece of a system of stroke care that has helped reduce death rates from stroke by more than 35 percent from 2000 to 2010. This includes public education to reduce risk factors and recognize the symptoms of stroke, emergency medical services processes and protocols to appropriately assess patients and emergency transport guidelines that immediately deliver stroke patients to a comprehensive stroke center. SNIS works to develop general standards to define principles of practice that will produce high-quality care and provides guidance on standardized techniques, procedures and practices in the neurointerventional field, not only to improve health care outcomes but also to define the core practice from which this specialty can build and grow.


May 2015
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