We've been trying to reach $1 million in funds raised for our campaign for a long while and I knew we could finally do it by the end of February. The last day, Tuesday, February 28th, happened to be international Rare Disease Day, so there couldn't be a more perfect day to finally reach this major milestone. And we DID IT!!! We actually DID IT!!!
We began this big push exactly a week before, on Feb 21st, when our campaign fundraising was at $977,422. We needed to raise $22,578 in a week to reach a million.
By the time I posted this reel on Monday that promoted our goal, we had already raised about $11,000!!! But that meant that on Tuesday morning, we still had about $10,000 to go. What happened throughout the day was truly a miracle!!
Watch this reel to see how fast the donations came in!!
We have been on CLOUD 9 since we reached this major milestone!!!! Thanks so much to ALL of you who have helped share our story with your family and friends. AHHHHH you are all so wonderful!!!
I have received a lot of questions since Tuesday night - and we've had an incredibly busy week with my work and Damian's 6th ERT infusion at the hospital (where some of this blog post was written!) - but now it's the weekend and I've finally gotten the chance to write a response! Here are my top most frequently asked questions this week:
How does it feel to finally reach $1 million?!
AHHHHHHH it feels AMAAAAAAZING!!!!!! We started this campaign in the middle of May of 2021. A month later, we were already up to over $500,000 (in large thanks to Sharon McMahon from her Instagram account @SharonSaysSo - her following raised over $400,000 in a single day!). Since that time, we have been inching closer and closer to $1 million. The day we finally reached it was a long time coming and it feels SO GOOD. I am so so hopeful that reaching this threshold will open doors in terms of publicity and that our fundraising efforts can now gain some momentum!!
How much money has been raised total (across all accounts)?
Our GoFundMe keeps track of ALL money raised through all accounts! When people donate via GoFundMe, it of course counts that automatically. If people donate via Venmo or PayPal, I download a spreadsheet of names and donation amounts and I input that data manually into the GoFundMe. In GoFundMe, it shows up as an "offline donation." GoFundMe does not take a percentage of those donations or anything - it just basically allows me to manually change how much money we've raised. I add any cash or check donations as well. And the Wylder Nation Foundation reaches out to me every time a donation comes in on behalf of Damian. It's all included in the GoFundMe count!
What is the status & timeline on the Brain 2.0 treatment?
It has been in development for years now! The medical research team of doctors and scientists associated with the Wylder Nation Foundation are based all over the world, but the physical lab testing for Brain 2.0 occurring right now is in Madrid, Spain at the Center for Molecular Biology. Dr. Lola Ledesma is leading an animal study for Brain 2.0 that has been in progress for a couple months now - it is set to be completed in about 1 more month!
The video below is meant to show what Dr. Ledesma's team does at a very high level, so not a whole lot of specifics here - but it does show you the lab and some of the team in case you are interested (Dr. Ledesma is bilingual but only speaks Spanish in this video - you can put on captions with a rough English translation done by Google by clicking on the settings/gear button and selecting Auto-Translate).
Once the animal study is completed in about a month, they'll do a bunch of analysis to determine whether this drug is ready to go on to the next step: human trial.
If it is, a lot of different processes have to take place, many of which are currently in progress (at least, as much as they can be without the analytics from the animal trial). The final drug needs to be produced in a human-grade pharmaceutical facility, and so one of the big processes is to get a pharmaceutical company on board to produce the new drug for this rare disease. The pharmaceutical company will require as much data as possible on the drug itself, but also data on patients with the disease.
The Wylder Nation Foundation is currently collecting that data from both living and deceased ASMD patients (Damian included!) in what they call the ASMD Accelerate Study. Essentially, we gave them permission to access all of our medical files from past or future doctor visits, procedures, exams, surgeries, blood draws, etc. They collect everything. From all those records, a professional health analytics expert has to sift through it all and recognize trends among patients and pull the most pertinent data that can then be presented to the pharmaceutical companies who will be potentially producing the drug, and therefore also producing the "manual" of how to measure the drug's safety and effectiveness.
If it sounds like a lot of work, it is. You can also probably see now why having more money sooner will greatly impact the speed at which all of this work gets done. A layman's example: if we have enough money in May to hire two analysts, the data analytics work could get done twice as fast as if we only had the money to hire one analyst in May.
Of course, hiring certain skillsets is only one cost. There is also the heavy cost of producing the drug, which includes the team of people needed to write the manual for it.
But all things considered in standard drug manufacturing timelines, we are very very close. Of course I can't give an exact expected timeline for when Damian can actually ingest the drug, but for the sake of ball-parking here, (like, are we in the range of 10 years away or 1 year away or 3 weeks away?) we are talking more like 1 year away if we can finish this fundraising quickly!
Congrats on hitting $1 million! What's the next goal?
My focus is hitting our overall campaign goal of $3 million as quickly as possible!! I think one reason (one very valid reason) that our campaign didn't reach the first million in 2022 is because for the entire year we had other goals in addition to fundraising. At the start of 2022, Damian had not started ANY of the 3 treatments he needs. In April he started Brain 1.0 and in December he started ERT - and both of those treatments required me to fight - really fight - tooth and nail the entire year to get them started.
Now that we have 2 of the 3 treatments, I don't have to make daily calls or write angry emails to the FDA or hospital CEOs. I can focus a lot more on fundraising now to get us to that last treatment.
How we fundraise is going to vary month to month (I'm currently planning an online auction and a fun run!) but one thing will stay consistent: I'll be continuing to post online and continuing to ask for your help in sharing our story. It has been our biggest help!
Thank you all for being here. Thank you for supporting us and being invested in this journey - it is so humbling and I don't take a moment of your help for granted. Thank you thank you thank you!!!
Please note: I am not a doctor, nor am I a formally-trained medical professional. I am just a mom who cares a LOT and learning as I go. If I say anything in error it is an honest mistake and I will make edits as soon as I am made aware of them.