All right y'all, it's about time!!!
Every year the days seem to go by faster, but this year has really thrown me off schedule! We've seemed to have more doctor's appointments than ever in the past few months, in addition to our bi-weekly infusion days.
(By the way, if you haven't seen our recent infusion day vlog video, you can watch it below!)
Of course, we're also just getting out of tax season, which continues to grow in how time-consuming it is. But while paying taxes is not fun, I actually do enjoy getting into the nitty-gritty analytics of finances.
Because we can use most medical expenses as a tax write-off, I itemized everything we spent in 2023 for Damian's health care and shared all the numbers in our latest YouTube video (in case you're curious):
It's fair to say we've been really busy this year, but the fact we haven't done a big, physical fundraising event yet has literally been making me ITCHY. Like I said, I like to track numbers, and while we have continued to raise funds for our campaign even during this busy new chapter of our lives (with Damian's new onset of seizure activity), I so so so want to be inching towards our goal at a faster rate.
2024 Fundraising Report
| GoFundMe Count | Increase from previous |
1/3/24 | $ 1,064,163.00 | N/A |
3/31/24 | $ 1,077,162.00 | $ 12,999.00 |
5/1/24 | $ 1,084,040.00 | $ 6,878.00 |
We are getting SO CLOSE to that $1.1 million milestone - and most importantly, the non-profit that is receiving all of these funds (the Wylder Nation Foundation) has never been able to be so productive!!!!
Treatment Development Update!!!
I just had a call with the Wylder Nation Foundation last week and they told me how exciting and encouraging it is to now be able to do studies and tests simultaneously instead of doing one study at a time, thanks to all of your generosity!!! We really are making a difference and there is a lot of hope that the coming months will result in some new information, and potentially even something we can add to Damian's experimental treatment regimen. OH I HOPE I HOPE I HOPE SO!!!!!
Still, we are getting very close to the end of a data and record-collection study they've been running for awhile and the next step of this vital aspect of treatment-development is hiring a highly-specific medical analyst to go through it all. As you can imagine, it's not cheap to do that. But completing this step (analyzing and compiling the right data and making clear sense of it in a presentational format) could be a major move towards getting the ultimate resource: getting a pharmaceutical company on board to start funding this research themselves.
This is really really really hopeful, really really really encouraging news, y'all. We're doing this.
I'm sure you can also appreciate, then, how Damian getting older and regressing more over time makes me physically itchy. We are right there. We didn't come this far to get this far. This has got to be done in time for Damian, it just has to.
It's FINALLY time for a new fundraiser!
I've been racking my brain lately to come up with a fundraiser idea that is SIMPLE enough that I can do it with our ever-busy schedule but BIG enough to still get some attention. So we're going to go back to the basics on this one:
We're doing a yard sale on Saturday, May 18th!!
We've actually done a mega-yard sale before and, with a lot of help from local friends, were able to raise over $1,000 in just a few hours on a Saturday morning. I think if I plan this out SIMPLY but smartly, we can do it again!
Maybe you would like to join us?? Maybe we can make this yard sale... a multi-location yards sale??
With Damian's birthday coming up (he'll be FIVE, can you believe it???), maybe we can add on a birthday bake sale too!
I'm still coming up with ideas and ironing out all the details, so if you have a suggestion on how we can optimize our efforts, please leave a comment and let me know!! And if anyone has a clever, catchy name we could call this fundraiser, please share - you all have come up with the best names!!
Stay tuned!!
<3
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