How did you first discover the Joe Niekro Foundation?

After being diagnosed with an AVM, I began to do research everywhere I could. In online forums, books, blogs, major medical center websites, and I found that many of the personal stories really resonated with me.  JNF had the most active group, and the most supportive members.  It quickly rose to the top of my list for questions and research.  I found the JNF website informative, and was touched by Natalie’s story and passion to spread understanding, awareness, and push for more research into aneurysms, AVMs, and hemorrhagic strokes.

What do you do as a volunteer for the foundation?

I have been a facilitator in the online support group for a little over a year. I also co-manage the San Diego support group.

What do you enjoy most about volunteering for JNF?

I enjoy helping those who are where I once was.  Those who are scared and confused because they are finding out about a devastating condition that has changed, or has the potential to significantly change everything about their life or the life of someone they love.  Being able to give advice, provide calming words, and suggestions for next steps. I hope that my words and presence gives the hope, guidance, and reassurance that someone might need to get through a tough moment, or a rough day.  I also like to be involved with the fun activities in the online group and live support group.  Celebrating milestones, sharing funny stories, and contests to keep people involved and engaged.

How has the Joe Niekro Foundation aided you in your journey?

I was encouraged to continue to pursue my ongoing quest for information and knowledge by a fellow online group member. When I finally got the chance to meet her in person, she shared her story of her own perseverance, and gave me an incredible example to try and emulate.

What do you enjoy doing in your free time outside of volunteering?

I work full-time as a Director of Digital Marketing and External Affairs for a non-profit organization that provides technology solutions to small cultural non-profits.  I have a fantastic little pup that makes me laugh everyday, and I love taking photos, cooking, baking, travel, and going on fun adventures in new places with my boyfriend.

Can you please share with us your story?

In September of 2012, I was diagnosed with an unruptured, Grade 4, left, frontal/temporal/parietal Arteriovenous Malformation (AVM), with 7 aneurysms caused by the increased pressure of the blood running through the AVM.  After suffering from simple/partial seizures, (which presented as facial muscle spasms and numbness), I would be unable to form words for about 30 seconds.  I went to the ER to find out the cause.  This is when I was told that I had an AVM.  When I started asking questions of the doctors in the hospital, and based on the responses I received, it quickly became clear to me that what I had, was something quite rare.

I now consider myself a survivor.  After being told by 6 different doctors over the course of almost 4 years that my AVM was inoperable and not likely to respond well to GammaKnife treatments due to the size and location, I had settled into a “watch and wait” pattern.  Getting annual scans to look for any changes and following the latest studies and trials, looking for new treatments and technology that might make it possible to treat my AVM.

I was encouraged by someone I met through JNF to look into Barrow Neurological Institute, and their Second Opinion Program.  After receiving my results a few weeks later, I was told by one of the most renown AVM and aneurysm surgeons in the world, that there was hope for treatment.

I drove 6 hours for a consultation, and in that meeting, I found out that seeking out the specialist with the right kind of experience made all the difference.  Within 4 months, I was back at Barrow, having an embolization and craniotomy to successfully remove my AVM.  It has been about 18 months since my surgery, and I still have a few deficits that I work to improve, but just knowing I was lucky enough to find the right doctor, as the right time, and that I am now AVM free, it was all worth the risk.

Find a JNF support group near you here. Can’t find one in your area? If interested in starting a support group, contact [email protected].