Archive for the 'Support' Category

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.

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.

23
Apr
15

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 –

https://www.facebook.com/groups/aneurysmavm

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

https://www.facebook.com/groups/ParentsBAAVM

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

https://www.facebook.com/groups/youngadultaneurysmsurvivors

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.




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