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Patient / Survivor Support Facilitators
The Joe Niekro Foundation™ community outreach is growing at a rapid rate. JNF Support Facilitators are brand ambassadors of the organization, representing us within their communities and assisting patients and families throughout the recovery process.
JNF Support Facilitators play an extremely important role in the success of the Patient Advocacy program. They are the Foundation’s “feet on the ground” and the success and strength of this program is a direct reflection of the strengths and accomplishments of our team.
The main focus of the Patient Advocacy Program is to provide outreach and support for the following:
- Neurology and other related professionals
1. Survivors – outreach and support for survivors is primarily conducted through the following:
- Online support groups
- In-person support groups
- Printed materials
2. Caregivers – outreach and support for caregivers is primarily conducted through the following:
- Online support groups –
- In-person support groups
- Printed materials
3. Neuro and related professionals – outreach is done by establishing connections to those professionals with the goal of forming partnerships as a means of connecting with survivors and caregivers. They will be provided with information on the Foundation and the opportunities available to them and their patients through the Foundation. These professionals include, but are not limited to: neurosurgeons, neurologists, endovascular doctors, nurses, stroke coordinators, occupational therapists, speech therapists, physical therapists, neuro psychologists, neuro radiologists, long-term care agencies, etc.
PATIENT/SURVIVOR ADVOCACY COMMITTEE LEADERS
My name is Michael Allen. In December of 2004 at age 15, I suffered a seizure and was taken to Vanderbilt Hospital, where I was diagnosed with a “grapefruit sized” AVM.
I had an embolization to treat it the following day. After seven more embolizations, I then had a craniotomy in July of 2005. After several complications including hydrocephaly, MRSA, and a hemorrhagic stroke, I immediately dealt with hemiplegia, now live with hemianopsia, and experience regular fatigue. I also have a significant visual field deficit, but I refuse to let any of that stop me. I finished high school in May of 2008, and transitioned into college in August of the same year. I had my most recent surgery, a cranioplasty during my third year in March of 2012. I graduated from Middle Tennessee State University in May of 2013 and currently work as a legal assistant at a local law office. I am thrilled to be an advocate for The Joe Niekro Foundation™ and administer the Young Adult Brain Aneurysm/AVM Survivors Group where I get to speak with other young survivors from across the globe and help them through their recovery journey.
My name is Mary Bratt—my full name is Mary Grace King Bratt. I’m a 67 year old AVM survivor, born and raised in Indiana. I have lived in Ohio for 43 years now, so I’m a Hoosier transplanted in the Buckeye state.
Somehow I lived my entire life without knowing I had an AVM until it ruptured at age 60 while we were vacationing in Albuquerque. Our 5 day planned vacation turned into a two month stay in the University of New Mexico Hospital and Lovelace Rehab Hospital. It was actually a good thing that the rupture occurred there and not when we were at home. The EMTs recognized my symptoms as those of an AVM rupture and transported me to the best facility. Had I been home in Ohio, I’m not sure our small local hospital would have recognized the symptoms and I wouldn’t have made it to a larger Columbus hospital–and I wouldn’t be here to share my story with you!
After diagnosis, the hospital staff told my husband that “it didn’t look good.” I was taken into surgery within an hour of arrival and a talented neurosurgeon performed a craniectomy, removing the AVM and adding clips. I spent 3 weeks in neuro ICU, a week in a regular hospital room and a month in a rehab hospital. I have no memory of anything from the time my hubby called 911 until about 7 weeks later. When we returned home, I continued outpatient therapy at Ohio State University once or twice a week for a year or so.
I do have some deficits from the AVM rupture. The most frustrating immediate after-effect was double vision. Fourteen months after rupture, I underwent eye-muscle surgery which corrected the double vision for the most part. I still struggle with it when I’m tired. I also had 6th cranial nerve damage which affected my taste, but that has improved over the years and I now enjoy eating most foods. I battle short-term memory loss, but my long-term seems to have improved. My balance is also a problem, but using a cane in unknown territory helps. A good thing that came out of all of this is that my depression has pretty much disappeared. The doctors think it was the AVM that had caused the depression and my irrational reactions to things before rupture. I’m blessed with that outcome!
After experiencing all the stages of grief, I have finally reached the acceptance stage. I try to focus on what I can still do, not on what I can’t. I want to offer support, encouragement, inspiration and hope to other survivors. I love meeting other survivors because it feels like finding a long lost sibling. It still amazes me that I lived my whole life without knowing I had this defect in my brain. I so admire other survivors, but the children hold a special place in my heart since I realize that I was blessed to be able to live my life with no prior symptoms except an occasional migraine headache. It breaks my heart that many of them won’t be so fortunate!
I became an Admin 2 years ago and did so because I want to be able to provide support to others in similar situations and help to provide a safe environment for sharing/offering support for all members.
A little known fact about me is that I was a member of the first mounted rescue unit in northern Indiana. This group was formed after devastating tornadoes occurred there on Palm Sunday, 1965 and it became clear that horseback was the only way to get to some of these people. Fortunately, we were never called into service, but it was good to have the training and know we were prepared.
I feel very blessed to have progressed as much as I have in the past 7 years. A large part of that has been because of the help and love I have received from my wonderful (caregiver) husband of 43 years, my 4 grown children, their spouses and my five (soon to be 6) grandchildren.
I am Frankie and I am a caregiver for my husband who had a ruptured aneurysm on April 28, 2013. My caregiver job is actually pretty easy lately as his neuro deficits have not been the lasting problem as much. His biggest deficit is scar tissue on his vocal folds from prolonged intubation.
He is not back to work yet to his career of being a paramedic and firefighter and he misses it bad. We were 39 at the time of his rupture and who plans to retire at 39?
We have four kids (Kennedy-21, Heaven-19, Logan-16, and Kasen-3) and live in Kentucky. I work as a Program Analyst for a government contractor and I commute an hour each way to work. That pretty much consumes a lot of time. But, don’t we all know how important good insurance is.
We have had a very crazy journey because of a brain aneurysm but in turn are closer now and have learned so much. His aunt had had three brain aneurysms before and I had a nephew who had a rupture from an AVM (a week after college graduation) and still nothing prepared us for this. I hope our journey can help others! It was such a lonely journey before we had all of you to share it with. My goal is to make sure no one else feels that loneliness.
I am Mary Cook, the facilitator of the Syracuse, New York Support Group. I am an elementary school teacher who lives in East Syracuse, New York with my husband and three children.
For many years I had headaches and they had gotten worse as time went on. So, my doctor decided to do an MRI before he prescribed any medicine. The doctor called me right after my MRI to tell me I had a giant brain aneurysm behind my right eye. When he told me this, I didn’t even know what an aneurysm was. In February 2011 my aneurysm was filled with Onyx HD-500. Even though I had a wonderful family and friends to help me through this terrible time in my life, I felt so alone. There was no support group anywhere in Central New York at that time.
I have made it my mission to spread awareness about brain aneurysms and to give support to people who have been affected by an aneurysm. I don’t want anyone to feel alone like I did.
To contact Mary, email email@example.com.
As a 5 year survivor, I am extremely passionate about the Joe Niekro Foundation™ and the support we give. I know that we make a difference in the lives of so many that feel alone. The most important thing is to have 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 most, but now I am a part of the most compassionate and supportive team, and am extremely grateful.
Tammy is the facilitator of our Colorado Support Group.
To contact Tammy, email firstname.lastname@example.org.
My name is Shari Davidek and I have been an admin since June 2015! My son Jack is an AVM survivor. He is 20 years old and three years into this journey! He had two AVM ruptures within 12 hours. His outlook was bleak, but he wasn’t having any of that and he is now attending college, working and living a very full life! I am married (24 years to my husband Rob!) and have four other children; Sam is 19, Max is 14, Charlie is 11 and Lily is 9. I was a Public Relations Specialist for a non-profit for several years, but gave up my job to be able to drive Jack to school and work since the AVM rupture robbed him of his right-sided peripheral vision. I spend most of my time in the parent room. I get a lot of joy from helping people, so I hope I am doing just that! I like to encourage, inspire and comfort. This is such a scary road to travel and I did it alone at first…I was so happy to find this support group! I plan to spend many, many years helping people get through this!
At 54 years old, I became a ruptured brain aneurysm survivor. I now facilitate the Rome JNF support group and hope to help spread awareness, educate the public about this dreaded disease, and raise funds for research. I hope that my efforts will one day help others not go through the tragic experiences so many of us have suffered.
To contact Debbie, email email@example.com.
As a young survivor I have walked in your shoes. I know how important a support group is. There aren’t many of us and we need to stick together and help each other. My mom joined the Joe Niekro Foundation™ Facebook support pages and she kept saying “get on the page Madeline, get on the page.” I didn’t understand what she was talking about until we started a Young Adult/Teen page. Once I joined the page and found other young survivors like me, it was awesome! I found girls like me! It was good for my soul. Now I am actively involved as an admin for the page and am able to help others with similar stories as my own. I love to connect with other young survivors and share our stories. In the future I want to be active in a local support group and help other survivors. Helping other people makes me happy.
I didn’t find the Joe Niekro Foundation™, The Joe Niekro Foundation™ found me. I immediately joined their support group. When I found other parents like me and that could relate to our struggle, it changed our lives. It was incredible to feel that we weren’t alone anymore.
I have been a teacher my whole life. When Madeline’s aneurysm ruptured and she survived, I knew that some day I would want to pay it forward. Being an Admin on the Joe Niekro Foundation’s Parent and Caregiver Facebook pages have changed my life in the most positive way. I love to accept new members and welcome them to the family. I love to connect new moms with experienced moms who have been there. Being an Admin helps to keep me positive when Mad’s journey is difficult. Helping and connecting families brings out the teacher in me. I am blessed to have been “found” by the Joe Niekro Foundation™. It is a perfect fit for me. I LOVE my job as as a Facebook Admin!
I’m Carrie and I’ve been an Admin for a little while. The most amazing thing I’ve done in life is raise 5 kids: Gaia, Céad, Pippa (Bebop), Iska, and Finn. By trade, I’m a Social Worker running a Restorative Justice program with Middle Schoolers. 2012 was a hard year for my family. I was diagnosed with some serious health issues in late March. Then, in May, Finn was caught in a tremendous hailstorm that wreaked havoc on my car. I got an insurance check the Tuesday after Memorial Day. On June 2 Finn and I landed in Geneva Switzerland! We camped in Eastern Europe for 10 weeks. After coming home Finn went Rock Climbing in Wyoming for 1 month and 6 weeks later he was on life support in STL Children’s Hospital after collapsing during his last varsity soccer game. We started learning a new vocabulary that began with Arteriovenous Malformation. It was October 25.
The “if only” list is long: If this had happened in Albania, Sardinia, Wyoming he would have not made it…He was in a coma for 5 weeks and after 1 more week in the PICU he transferred to the inpatient Neuro rehab floor for 4 months. Gaia and Céad left jobs and lives to come home to help. Our family pulled together. Eventually, Finn needed a vp shunt and a prosthetic bone flap. Upon discharge, he was in a Day Treatment program for 6 months. From there he started to reclaim a life of his choosing and did outpatient therapies for 1.5 years. 5 brain surgeries and 4 years later, Finn is enrolled in a college program and lives in a dorm. He recovered almost 100% physically. He’s lost some vision and struggles with short term memory issues. But, he’s a happy, resilient guy and I’m so proud.
Charu Raheja is a Survivor of a ruptured brain AVM in February 2014. Even though Charu had extreme headaches, dizziness, and symptoms of an AVM rupture, she kept ignoring her symptoms and did not seek immediate care. She was shocked to learn that her symptoms were due to a ruptured AVM and was extremely lucky that the bleeding stopped on its own. Charu had complications during her tests and procedures, which included a punctured carotid artery. She underwent a surgery to close her AVM at Baptist Hospital in Florida under the care of Dr. Ricardo Hanel. Even though Charu works in health care, helping others evaluate the seriousness of their condition daily, she was surprised to learn how often people ignore serious headaches and end up with a less than good outcome. She was also surprised about how little people know about aneurysms and AVMs. This led her to become an advocate for the Joe Niekro Foundation™. She felt the need to educate people about the brain and symptoms that require immediate care. As the facilitator of the JNF Jacksonville Support Group, she provides support to people who have suffered from an AVM or aneurysm, helping them overcome the difficulties they face, isolation from family and friends, difficult physical recovery, and the mental changes a survivor experiences.
To contact Charu, email firstname.lastname@example.org.
Hi all! I’m Gwen. My story started on the 22nd of March 2014, when my AVM ruptured at the age of 21 and gave me a subarachnoid, intracranial and intraventricular hemorrhage. Now I can’t remember much of those 2 weeks of my life, but I do vividly remember two moments. The first was after the rupture, I remember thinking to myself…. “Thunder clap headache… neck stiffness…. photophobia…. vomiting…. am I having a subarachnoid hemorrhage?! No…. I’m just being a med student, this is med student syndrome.” The second moment was after I came out of the CT scan, the doctor came round to tell me and my boyfriend that I had had a subarachnoid hemorrhage. Apparently I didn’t vocalize this, but my first thought was “Yes!! I was right!! Wait…. that’s not a good thing….” If you haven’t already guessed – I’m a med student. And the greatest irony is for as long as I can remember, I’ve always wanted to be a neurosurgeon!!
Fast forwards 2.5 years later I’ve had many, many scans, 1 embolization and 1 gamma knife treatment in December 2015. My surgeons don’t want to try and cut it out as it’s quite large and complicated, so we’re going down a relatively conservative route for now. Meanwhile, I’m happily back at med school after taking 1 year out to recover from my stroke. I now have a 1st class degree with honors in Neuroscience, my boyfriend is now my fiancé and I’m now a final year med student – from July 2017 I will be Dr Rees-Evans. I’ve also just completed a 10 week placement in Vietnam and Australia, where I worked in neurosurgery departments in both countries. Absolutely amazing experience, and it’s amazing to see the community for AVM/Aneurysm survivors is universal! I’m still a baby admin – been an admin for about 6 months now, but I’m so thankful and grateful for everything that the JNF groups have provided to both myself, and all you beautiful survivors, relatives and caregivers out there.
My name is Judy Riker and I’m an admin for JNF.
I mainly keep an eye on the caregivers support page as that is how I came to find JNF! In June 2011 my husband Ken suffered a rupture and SAH and our life changed!! He really has no idea what has happened and I’m thankful for that. As lonely as I feel at times it sort of makes this journey easier.
I grew up in New York State and moved to central upstate NY over 25 years ago! I’m the middle child; three sisters and one brother! I just turned 60 in May!!!!
I worked in the medical field for many years as an LPN. At the time of Kens rupture I was working for VNA Home Care and had planned on retiring from there but it happened a little sooner !!!
Ken and I have three grown children and 5 grandchildren! As life changing it is I try to stay positive and keep our life going as best I can!
Please know you can reach out to any of the admins if you need too!
I was thrown into the unfamiliar world of Aneurysms when my mum was diagnosed with one that had ruptured. The sad part was that four doctors saw my mum on separate occasions and despite us telling them she really wasn’t right, they all said she had a migraine. They were so wrong. A week after her initial “severe headache” my mum fainted at home.
After finally having a scan, it showed a ruptured brain aneurysm and they sent her straight to Southampton neurological hospital to have the coiling. It was too late. My mum had a second bleed in the ambulance and fell into a coma for a month before passing away. Blood had reached all four compartments of her brain and she was blind.
My mum was 54 when she left me a motherless daughter. I’m still not sure it’s sunk in. I started university one month after my mum passed away and everyone told me not to go because I wouldn’t handle it, but I showed them. I did it and graduated last year!
I’m doing all I can to raise awareness here in the UK and I have met my soul sister since losing my mum as she also suffered a rupture. I also volunteer at the hospice that took care of my mum in those last precious moments. I will forever be truly grateful to them.
I live in Hampshire, England, and for anyone who lives in the UK, you’ll also know that awareness is not so big over here. There was an article recently that said 68% of GP’S in the UK are not confident when dealing with neurological problems, and that’s why my mum had the odds stacked against her.
It is such an honor to be admin and I know how hard everyone works to be there and support everyone. I’m so pleased to be a part of this.
Carol’s brain aneurysms were incidental finds when having a CT scan of her thyroid in July 2012. In September 2012 she had a craniotomy to clip one aneurysm and wrap the other. Soon after surgery, she became a member of the JNF online support group. Carol has a passion for helping others and spreading the awareness of brain aneuryms and AVMs. She is looking forward to setting up booths at local events to raise awareness and hosting fundraisers to benefit research. Carol is the facilitator of the San Diego Support Group. Carol has a background in graphic design so has also been volunteering her time working on various pieces for the foundation. Carol has been married 31 years and has 3 grown children (son 28, daughter 25 and son 22) and 2 grandchildren. Her youngest son was recently diagnosed with an aneurysm. Carol enjoys the outdoors and used to walk on hiking trails every weekend. Now due to other health issues is unable to walk very far, so she now enjoys taking drives in her convertible. A goal that she has is to visit all of the national parks . . . you guessed it, in her convertible.
To contact Carol, email email@example.com.
My name is Marvel Vena and I am an AVM survivor of 34 years. For years after my surgery there was nothing to provide support for AVM and aneurysm survivors like myself, so it gives me great pleasure to be a part of the Joe Niekro Foundation. These conditions are silent killers. We need to educate people about family screening. Support and information for those that have gone through a brain bleed and their families is crucial.
I have witnessed the friendships that have accrued due to our meetings and it is very satisfying. The speakers we have secured have been very inspirational and our Chicago Support Group continues to flourish.
I am also a facilitator of a family information group for the neurosurgical intensive care at Rush University Medical Center in Chicago. Since 2002, we have been educating families about what to expect after a brain bleed. We inform them about screening and other services that are available to them while handing out information on our JNF support group.
I am so grateful to have found an organization that is specific to my own brain surgery. Our Chicago support group meets the third Thursday of every month. We have great support from the physicians and I know with their help and the input from our other 2 facilitators, Melanie and Traci, we will continue to expand.
To contact Marvel, email firstname.lastname@example.org.
Hello my name is Jessica Wilson and I am one of the Facebook admins. I spend most of my time in the Honoring the Taken Room. I am a member in this room and the parent room and read many of the parent room posts.
I am in the Honoring room for a reason. My daughter Madelaine passed away in August of 2013 from a hemorrhagic stroke due to her AVM. We were only aware of her AVM for the two months before her sudden passing. Before discovering her AVM, Madelaine seemed to be a healthy, busy 8 year old girl.
Our journey through loss led me to seek support and answers. I became a member of this organization and was inspired by so many of those who were also fighting. I became an admin more recently, in summer of 2016.
I live in East Tennessee in Knoxville, in the valley of the Smokey Mountains. I am a mother of 4; Nathaniel age 13, Madelaine who would be 11, John Michael age 9; and our sweet rainbow baby Meara Beth who turns 2 today. My husband John and I have walked through much together in the last few years; as we had just married about 3 months before my daughter was diagnosed.
I love helping people and walking along side others in whatever place they may be in life. I just enjoy people and being social so much. I have received so much kindness in my life, and the little bit I can offer in return helps me move forward.
I have a background in mental health counseling and am a school psychologist. I love family and friends, movies & Netflix (especially sci-fi, suspense, and fantasy) swimming, singing, antiquing, traveling to new places, the mountains, the beach, and learning about new things.
Thank you all for inspiring me and for the support we give to one another.
Connect with Us
- Subscribe to our Knuckle-Up Newsletter
- Become a Fan on Facebook
- Follow us on Twitter
- Follow us on Instagram
- Join our Online Aneurysm/AVM Support Group
- Join our Online Parents Support Group
- Join our Online Young Adult Survivor’s Support Group
- Join our Online Aneurysm/AVM Caregivers Support Group
- Join our Online Honoring the Taken Support Group
- Support Group Locations