You guys are great and everyone involved (The GFPD, The FcF, and me personally) appreciates your support and interest!
I can also happily report that we are accumulating quite the prize pool for the associated raffle. Now seems as good a time as any to get that rubberband ball rolling so click that link, ogle the amazing prizes, and buy an uncharacteristicly large number of raffle tickets!
We are 46 days out from this hootenanny. Which is a slightly arbitrary timeframe, but its time to get eyes and brains ticking on this again
There are still spots open for M4X, although we are having names trickle in (love to see it). If you havenât signed up yet but have been considering it, maybe time to check your calendar again and see how you can make it work!
Some veeeery early season course photos to tempt you:
If youâre on the waitlist, please get me your registration payment so I can confirm you and move you to the active roster! Donât just stand at the edge of the dancefloor, commit yourself and get out there to make some memories!
We have tee gifts on order, hole prizes planned, a competitive 18 quota round in the morning, and total bonkers fun/chaos lined up for the afternoon. Itâs gonna be a blast
Even if you canât make, we donât want you to have total FOMO: hit up our raffle and get your hands on some mementos that way. TONS of great prizes in there, itâd be a shame for me to keep them all to myself.
Alright, we are about a month out and itâs time to get to brass tacks.
I could not be more excited about this event for us. Tee gifts are trickling in, Raffle prizes are absolutely tricked out, pairings and tee groups are getting set, and mini-competitions are being arranged. Insert iâm-so-excited.gif
Ahead of M4X, weâll have our customary prep round at U of M on May 10th for those whoâve indicated theyâre interested. Weâve reserved a block of tee times starting at 12 Noon. Super casual affair, show up early, meet some old friends, make some new ones, and weâll go off in 4âs as weâre ready. We have 32 spots set, but we might be able to finagle a few more if numbers demand it. Please be on time so we can send out our 4âs!
As for M4X on the 11th, weâve got 22 names who signed up but havenât paid to be fully registered - itâs getting to be decision time. If you have different notes regarding payment or were hoping to work something out with me offline, DM me so we can get things settled.
As a reminder, payment is $160, sent to Venmo @mrlatham88 , last 4 7741. Please include M4X Registration and your Refuge Handle in the notes!
If youâre not going to be able to make it and need to come off the list we can adjust that way too, but the course is calling me which means Iâm calling you:
@Conley76 @nross22 @57_Flavors @Golf69 @philmundo @sageat [John Pesci] @Doctor548 @UncleDrew @Mkg [Jon Ray]
As to the aforementioned bonus events:
Weâre getting closeeerrrrâŚ
10 user limit, also on call:
@Conner1212 @JDGAFFLIN @Dylanp @bbonanno11 [Matt Bruek] @SlopeGolfCo @YoureStillAway @theclv24 [David Sowle] @woodsy @rjsau98
How do we put our name down for the UofM Friday round?
Everyone indicated [Yes/No] on their registration in UKG. I have you as YES
Iâll probably reconfirm with the yesâs as we get a little closer and build out pairings
Thank you!
Venmo sent.
Working on a few more non-Refuge folks. Might be able to put together a foursome. Should have everything squared away by the weekend.
Sowle just paid so you can check him off. Iâll have mine in soon.
I believe @YoureStillAway had paid, his name is Luke Nesbit
not seeing him in my payment records by username, govât name, etc., letâs double check with him on this one?
It slipped my mind. I was waiting on a new debit card and forgot to send payment when it came. Will be doing it here soon
No worries, glad I didnât miss it!!
is Detroit airport that small? who flies in direct?
Itâs a Delta hub, so that would be your best bet
Hey Matt,
I had been waiting to confirm for Max due to the possibility of needing to travel to the east coast that weekend, and unfortunately that is the case. Iâm looking at UKG but not seeing if I need to unregister there, or how to do so. In any case, you can drop me off the list. Bummer.
no worries. thanks for letting me know, I totally understand how planning or trips can get in the way for guys who hadnât put in, but I wanted to ping the group and try to noodle out people for whom that was the case so I could plan other things appropriately.
weâll be sorry to miss ya, but hopefully see you at some of the other events this year!
WowâŚitâs 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 arenât as familiar with Maxâs 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 goâŚnot 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 weâve surpassed it every year since. Friends, family, and everyone in the community embraced this random cause theyâve never heard of, and itâs become an amazing community tradition. Weâre now getting ready for the 9th annual event, and so far weâve 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, weâve 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 didnât see their kids reach the age of 10. Heâs 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 weâve been fighting other battles we had been less than vigorous in forcing him to wear them. Well, over the last several months weâve done a series of serial casting sessions, and weâre excited to see him standing up and playing once again! Here he is at a recent doctorâs 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 canât 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 Iâll 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!
Update email went out this morning to all participants - check that out for details, itinerary, and notes.
Also, we still have a few spots available if youâre a last minute commit (or have someone you want to convince to join!)
I have to remove myself from the UM round for Friday. Apologies for the late notice.
