Wow…it’s hard to believe that Maxamania IV is now only a couple of weeks away! I cannot wait to be there and hang out with all of you! For those that aren’t as familiar with Max’s story and the GFPD, I wanted to provide a little background.
My son Max is now 10 years old and has Peroxisomal Biogenesis Disorder (PBD). He was diagnosed at 15 months old - we were told that he had a terminal disease with no cure. Our entire world was shattered in an instant. The next few months were mostly a daze as my wife and I tried to figure out how to cope with this new reality. However, we had contact info for another family with the same disorder, and eventually my wife reached out and had coffee with another mom. She convinced us to come to the upcoming conference put on by the Global Foundation for Peroxisomal Disorders (GFPD) that summer in Omaha. We put on our brave faces and decided to go…not knowing what to expect at all.
When we arrived, our entire lives were changed. We were no longer alone - we had literally a second family full of other parents who were traveling the exact path we were on. Not only that, we met with some of the leading scientists and doctors in the entire world researching this rare disorder. Simply put, the GFPD gave us hope.
We spent 5 days at the conference and we were so inspired that on the way home we started brainstorming how to get involved and make a difference for this incredible organization. We initially thought of pulling together some friends and having a small golf outing one afternoon to raise money. Well that small golf outing in 2016 quickly sold out, so we added a morning session - which immediately sold out too. Before we knew it, we raised nearly $100k that first year, and we’ve surpassed it every year since. Friends, family, and everyone in the community embraced this random cause they’ve never heard of, and it’s become an amazing community tradition. We’re now getting ready for the 9th annual event, and so far we’ve raised over $1.2 million in the first 8 years to go towards cutting edge research and supporting other families affected by this rare disease. In the meantime, we’ve seen the GFPD organization evolve from a scrappy non-profit run entirely by parent volunteers to a professional organization that works with other leading rare disease non-profits and has enable research collaborations with leading universities and the NIH.
As I mentioned above, Max is now 10. Which is a strange milestone in a way, because unfortunately we know far too many parents in the GFPD community who didn’t see their kids reach the age of 10. He’s doing fine right now and is thriving in his adaptive classroom at school, but daily life has plenty of challenges and you never know when something else is coming around the corner. One big project lately has been casting his feet to correct some muscle and tendon weakness. He has had various braces for his feet over the years, but as we’ve been fighting other battles we had been less than vigorous in forcing him to wear them. Well, over the last several months we’ve done a series of serial casting sessions, and we’re excited to see him standing up and playing once again! Here he is at a recent doctor’s appointment actually standing up to measure his height!
And one more smiling Max pic for good measure:
This video sums up the role of the GFPD pretty well:
If you can’t make Maxamania IV/M4X but still want to help, you can donate directly online here - this is our GFPD golf fundraiser: BidPal One Just shoot me a DM and I’ll make sure it gets added to the Maxamania total.
Or, since I know the Refuge always loves Merch, you can also shop our custom merch shop here - and orders can be shipped directly to you! We are closing the store on this Friday, April 26th though, so hustle up: Tee It Up! for the GFPD - SelectCorporateWear.com
If you want to read more, you can also check out some of the prior Maxamania threads:
(one of the all-time HOF refuge threads in my opinion)
Thank you everyone for adopting Max and the GFPD as such an important cause, and I cannot wait to see everyone in a couple of weeks!!
Cheers!