Apologize this note is long overdue, but a huge, huge thank you to every single person that attended Maxamania III and helped support the GFPD!! I’m blown away how you guis have sort of adopted Max and this amazing cause. $2600 for the GFPD is unreal, and by itself is probably one of the top 10 single fundraisers this year for the organization! I wish I could’ve been there, but reading the recaps and seeing the photos was awesome. Looked like a stellar event once again!
Combined with our local fundraiser here in Illinois which had another outstanding year, we’ve now raised over $1.2 million for the GFPD in just over 8 years. 
This money has drastically catapulted the GFPD from a scrappy, family-run organization into a leading rare disease patient advocacy organization that collaborates with world-class researchers to look at potential treatments for peroxisomal disorders.
My wife is on the Board of the GFPD, and we recently had the opportunity to visit with one of the leading scientists affiliated with the GFPD. He’s very excited about the possibilities in the coming years as technology continues to outpace past developments. There is significant progress being made in mouse models on cutting-edge treatments such as retinal gene therapy that may be able to restore or improve vision in kids like Max that are impacted. There are also positive developments on gene therapy treatments that can help with liver damage and other impacts of this disease (liver issues are a huge component of Max’s disorder). The GFPD has also created close ties with the NIH and FDA to hopefully speed along a clinical trial when a treatment is ready for that step. You guis have helped enable all of this with your outstanding support.
Despite the progress on the horizon, this has been a tough month for our GFPD family. We had to say goodbye to another kid with Max’s disorder who lived just 45 minutes from us, so we knew them well. 45 minutes away in a rare disease community can feel like a next door neighbor at times. Here were are hanging out with them at a local brewery just a week or so before he passed away:
(Max is in the stroller with his back to us. My wife and daughter are there on the left). This family lost their son just before his 6th birthday and they had been planning a Make-A-Wish trip later this summer. When facing a disease like this, you know the moment is coming but it’s still impossible to be ready. The funeral was on Hans’ birthday earlier in June and it was a hard day - but I’m glad so many families from the GFPD community were able to make the trip. If you’re the praying sort, please pray for healing and comfort for this family.
Thank you once again to @eatonsb @paroutfromhere and anyone else from the Fresh Coast Flock who was involved behind the scenes in Maxamania, and thank you so much to every single person who attended, donated, bought merch, or bought raffle tickets! The tee marker is simply unreal to see in person and the UM scorecard was an awesome touch! I’m always so humbled by what this place can accomplish.
As far as Max goes, we’re having a good summer. He’s already wrapped up 3 weeks of summer school. He loves to swim and be in the water, so we’re trying to get to the pool as much as possible. On July 4th he literally fell asleep on me while floating on the lazy river! Otherwise we’re just rolling along and are thankful for no recent surprises. 
I have no idea if there will be a Maxamania IV or not - if there’s a desire to move on to another cause or do something more local, I totally get it. But whether it’s in honor of Max or not, I hope to be there once again in person as long as it’s not May 16-17, 2024 (our local GFPD golf event is already on the books!). If any other date is feasible, I’m there!
Thank you again!!
Cheers,
Todd