On Saturday September 21st, our western NY family and friends along with Diamond D Performance Horses hosted our 3rd annual benefit with proceeds going to our foundation. The day was full of sorting cattle, a Calcutta, live auction, raffle baskets and Aven tattoos galore! A great day was had by all on the farm raising money for the cause!

We are so thankful for all of the businesses, family and friends who donated money, items for the auction/raffle and their time to volunteer at the event. Amazingly $20,500 was raised during the event. These funds will be used to support our ongoing commitments to fund research. Thank you to all of those that participated in the Cowboy Extravaganza!

Aven spent 87 days at UNC in the Newborn Critical Care Center (NCCC) at UNC hospital. On Sunday October 2nd the hospital held a special fall festival event for NCCC graduates and their families. There were superheroes, princesses and lots face painting and fall games. The foundation donated copies of The Adventures of Amazing Aven and representatives were on hand to pass out copies to graduates and their families. Over 100 books were given away! It is our hope that the families will enjoy reading the book with their children and learning about the foundation as well.

Thanks to your support and generous donations we have committed to fund $66,142 over 2 years to the Moseman Lab at Duke University. This money will go directly towards research needed to develop an antigen-based diagnostic tool for PAM. The goal is to provide a rapid test that can provide results in less than 15 minutes leading to the early diagnosis of naegierla fowleri! And the coolest part of it all....it will be called “Aven’s Assay!”

This is ground breaking research. While a spinal tap will still have to be completed to have CSF to test our hope is that in the not so distant future a sample can be used to detect extracellular amoeba “debris” in the fluid within minutes. This is different than current diagnostic tools that are available. Think Covid antigen test versus a PCR test. Early diagnosis = early treatment = lives saved. This new process will hopefully enable physicians to have a test at their finger tips in hospitals around the country and will take out the process of transporting samples to labs and keeping the CSF at specific temperatures while taking out the element of time that is so important in dealing with PAM infections. As with any research, this will take time and this is a multi year collaboration. We are so thankful for new advancements in early diagnosis made since last year when we lost Aven including a new PCR that was released last week. We hope this research will aid to the work already being done. Phase one will include developing and characterizing naegleria fowleri specific antibodies and the first half of our commitment of $33,000 has been sent over for work to begin!

We can not bring Aven back but we are committed to making a difference going forward and we are so excited about what is to come from this grant. We are so thrilled to partner with two amazing researchers who are here in our home state. Ashley and Annie Moseman are working on the forefront of amoeba research and we are honored to partner with them. As with any research nothing happens over night and this will take time but it is our hope and dream that one day to have “Aven’s Assay” in every hospital across the nation. Aven’s legacy of being a doctor and helping save other babies will live on just not how we ever imagined it.

Thank you for your generous donations and unwavering support and for believing in us. We know that there are so many amazing organizations out there and we value your support more than you will ever know. Thank you for trusting us to put money back into research and education that will have a direct impact. A lot has happened over the last year and while our pain is still unbearable it gives us hope to know that we are helping fund research to hopefully help save others. It is our hope that within John and Genes lifetime they will get to see a world with zero deaths caused from the amoeba naegleria fowleri

On the one year anniversary of losing our sweet boy we encouraged everyone to “Live, Laugh, Love and Play the Amazing Aven way” while honoring our boy and giving back to our communities. The response was incredible. People all over the country chose their own unique ways to show kindness to others. Blood was donated, countless ice cream cones were purchased for strangers, donuts were given to fire departments, creeks were cleaned, cookies taken to hospitals, pictures drawn for neighbors, school supplies purchased for those in need, meals purchased for others at restaurants, flowers given to the elderly, books donated to schools… the list goes on and on. In addition people took time to take their children on new adventures. Countless fish were caught and tadpoles were given new homes in honor of Aven. Families spent time together and laughed and loved like Aven would have wanted us all to do. We hope that “Aven’s acts of kindness” will be an ongoing thing. We encourage everyone to print off the “Acts of Kindness Cards” and to use them randomly when you feel called to do so. Aven always had a smile on his face and was making others laugh. We can now share that joy by spreading kindness to others in his memory.

To print off kindness cards click on the link below. Please feel free to share pictures of your act of kindness on the Facebook page or by using the hashtag #avensactsofkindness

On Sunday April 24th hundreds of friends, family and members of our local community gathered at The Adventures of Amazing Aven Book release celebration party. The day was filled with happy smiles and laughter as children of all ages played kickball, had their face painted, played lawn games and enjoyed ice cream with extra sprinkles. Author Veronica DeStefano and illustrator Anna Freeman were on hand to sign books. We sold over 600 books! Please enjoy some pictures of the day in the slideshow by clicking here Book Release Slideshow

The Adventures of Amazing Aven can be found on Amazon at The Adventures of Amazing Aven

Summer will be here before we know it and kids will be out of school. Everyone will want to be participating in fun water activities. We hope that this billboard will cause people to slow down and think. “What’s in the water?” We hope to spread the message to SWIM SAFE to all the people traveling down the highway over the next few months. PAM is 99 percent fatal and 100 percent preventable! Protect your loved ones. Know the risk and join us in spreading awareness. It could save a life!

When we first lost Aven I didnt know where to turn. I was searching to find a connection to other parents who had lost a child. I stumbled upon the Podcast Always Andy's Mom. After the sudden death of her son, Marcy started a podcast to allow families who have lost a child an opportunity to share their story and talk openly about grief. Grief is often not talked about and we are so thankful that she has this platform to allow familes who have lost loved ones and experts who care for them to come together and share stories of hope.

I was honored to recently be the guest on the Always Andy's Mom Podcast. I encourage you to listen as I share about the life of our amazing little boy, about our foundation, how our family has dealt with our grief and how Aven continues to touch lives every day.

We are so excited to share that thanks to your support and incredible generosity we donated an incredible $25,000 to UNC Children's Hospital. The Amazing Avens Quest for Amoeba Awareness Fund was created to honor the legacy of Aven. The donation will be used to support the Department of Pediatrics in their pursuit to aid in the education, treatment and research of Naegleria Fowleri and Primary Amebic Meningoencephalitis (PAM).

It means so much to us that doctors that we consider friends and the hospital that we consider a second family has decided to partner with us on our endeavors to spread awareness and fight so that no other family has to go through the same tragedy as our family.

Thank you for believing in us and for trusting us with your donations. We are commited to putting money back into places that will make a difference and we know that this is just the beginning of an incredible partnership. Thank you from the bottom of our hearts for everyone that has made this possible.