Alright – so today we’ve got the honor of introducing you to Mark & Sherri Logan. We think you’ll enjoy our conversation, we’ve shared it below.

Alright, Mark & Sherri thanks for taking the time to share your stories and insights with us today. Let’s start with the story of your mission. What should we know?

On February 1, 2013, our son, Ryan Logan, was diagnosed with a Grade 4 arteriovenous malformation (AVM) in his brain. This is a tangled ball of arteries and veins with no capillaries to slow the blood flow down. This rare diagnosis only affects approximately 1% of Americans. The two main risks of not treating an AVM are seizures and brain bleeds. The average age of a brain bleed due to an AVM is 17 years-old. Ten percent of these are fatal. We were originally told that Ryan’s AVM was too large and complex to treat and the risks of treatment were just too high. We were told to go home and let him “live his life.” The risk of doing nothing was life changing and petrifying. Ryan had a “ticking time bomb” in his brain and there was nothing we could do about it. Ryan had a small brain bleed in 2014 which he recovered from fully after a month. The doctors all decided it was time to do something, as his AVM had become unstable. On July 7, 2015, Ryan had a catastrophic brain bleed during a procedure and he had to learn to walk, talk, eat and perform all activities of daily living again. It was while Ryan was in the pediatric intensive care unit (PICU) that we discussed with one of his neurosurgeons, Dr. Roc Chen, our passion to start a foundation to find a safer treatment for all of those affected by an AVM. With being such a rare diagnosis, there was little to no research being done anywhere. Dr. Chen discussed his passion for wanting to start research on AVMs but he didn’t have the funds or the time to do it himself.

We decided to form a 501 C 3 non-profit that would raise funds to increase awareness, find a safer treatment and have earlier detection one day. We named it AVM Research Foundation. Since our inception, we have been able to give Dr. Chen $1,300,000 towards his research. He has become the very FIRST researcher to make a TRUE AVM in an animal model. Physicians and researchers all over the world are able to now study different treatment modalities to find a safer treatment. Ryan has had four brain surgeries over the years before finally being diagnosed “AVM free!” We know this will not “help” Ryan, but if we can help any person and family not have to go through what we went through it will be so gratifying.

As always, we appreciate you sharing your insights and we’ve got a few more questions for you, but before we get to all of that can you take a minute to introduce yourself and give our readers some of your back background and context?

If you would have told us years ago that we would be starting a non-profit, raising money for medical research, and holding the hands of others as they navigate through this diagnosis, we wouldn’t have believed you. Our son is our inspiration. Everything he does every day is so much harder for him than to most people. He has such a great attitude and is such a joy to so many. Although we are committed to raising funds for research, we also are there for anyone who needs support or resources for any aspect of their journey with themselves or a family member going through an AVM diagnosis. We help direct people to support groups, other families with similar stories and educate them as well as the general public about AVMs. We are proud to say we have the most supportive friends, family and community behind us. We could NOT do any of this without God, our donors and our volunteers. We love to share our story so others know they are not alone and to teach people some early warning signs of AVMs. Not all AVMs present symptoms before a brain bleed so it is a tricky situation. We have social media posts, have been interviewed through different media outlets, such as podcasts, magazine articles and several news outlets.

We’d love to hear a story of resilience from your journey.

Like most, COVID brought a new set of hurdles to raising funds for medical research. We were not able to host several of our fundraisers in person and that is the main way we get funded. We have a crawfish boil in the spring and a golf tournament in the fall. We try to have several smaller fundraisers throughout the year as well. Unfortunately, the research team still needs the funds just as much as before COVID. We had to get creative and figure a way around this obstacle. We decided to have a “drive-thru” crawfish boil. GO Crawfish, our crawfish supplier (and dear friends) boiled up some of their amazing crawfish and we had everyone drive through, order their crawfish, buy t-shirts and take their crawfish home to eat. Some even brought coolers and loaded them up. Ryan and the family were there to greet with a wave! The line was so long it went out into the main road and blocked some traffic for quite some time!

Let’s talk about resilience next – do you have a story you can share with us?

Originally, we were at a different hospital when our son was diagnosed. We had met with Ryan’s pediatric neurosurgeon about starting research. We discussed all that we would do for him and the research. After the meeting, the doctor completely “ghosted” us. We were perplexed, as we just told him we were planning on giving him millions of dollars for his research, etc. Well, we would try and call him, his assistant, and even went down to his office an hour away to try and reach him to see what was going on. We never could get a hold of him and were honestly, confused, frustrated, and a little hurt. It is only now that we can look back and see the story. First of all, we eventually found out (from his mouth) that in eight years he had only operated on 10 AVM patients. This is not what you want to hear when you are going to spend your future raising funds for research. We wanted an “expert” or someone with more experience. The doctor eventually moved to a different state so that would have made things a little harder for us as well. We never gave up and kept pressing and trying to figure out who the best doctor who was also willing and able to do the research. Enter Dr. Roc Chen, whose team has made the FIRST TRUE AVM in an animal model. We are definitely in the right place. I just say “don’t give up” when you have a worthwhile mission. Keep pressing forward and figure out a way!

Contact Info:

• Website: https://www.research4ryan.org
• Instagram: https://www.instagram.com/avmresearchfoundation
• Facebook: https://www.facebook.com/AVMResearchFoundation
• Youtube: https://youtu.be/UdFpxNMZ2Rc?si=Fm8_u_8e44YGZEj3

Image Credits
Blossom Photography