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The sweetest Rare Disease Month!

Happy first week of March! We just wrapped up the shortest month of the year, which also happened to be Rare Disease Month, and I am so grateful to share the results of our latest fundraising push with you!

Our goal was to reach at least 1,185 people who could donate $29 by February 29th via social media. While we didn't reach our monetary goal, we still raised an incredible amount of money, thanks to your help!!

Total amount raised: $10,029

We surpassed $10,000 in a month!! That is no small feat!! Thank you thank you thank you so much!!! Every little step forward really adds up over time and is making such a huge difference.

This month when our family went down to the World Symposium to meet the scientists working on Damian's treatment, I had the incredible privilege of hand-delivering another check to the Wylder Nation Foundation (they are the ones doing the research). This check was a compilation of hundreds of Venmo and PayPal donations that have come in over the past several months.

The envelope was sealed when I handed it to them, but I later got this text:

"WOW... Thank you so very much for everything you guys continue to do in support of Wylder Nation, and all of the funds you continue to raise to support advancing Wylder Nation's research initiatives.

What you have done is truly impacting our ability to make advancements in improving the lives of all ASMD patients, and allowing for us to put additional shots on goal that we otherwise would not be able to do.

This will undoubtedly help spark innovation, and attract additional interest from industry which will ultimately infuse more funding into addressing the continued unmet needs of the ASMD community.

You guys are awesome and it's an absolute honor to partner with your family on this journey. Thank you for being true Warriors in this fight with us... We Will Persevere!"

I got permission before sharing his text here, but I thought it was important for you to see how appreciated our collective efforts are and how this money we collectively are raising is actually going to work as we raise it (a common question I get). It is not like these funds are useless until we reach $3 million in total. Our campaign is actively funding all the individual tasks that need to be accomplished to reach our goal of getting lifesaving treatment in our hands as fast as possible, and we are accomplishing each task one at a time, step by step.

Thank you thank you thank you for all your support and your donations. They really do mean the world to me. I hate that I sound like a broken record when I say that, but I promise you I am not numb to people's generosity. Not only are you literally helping us save Damian (and others fighting ASMD now and in the future), but your help and encouragement is such an emotional support to me. I still feel like I am riding an intense emotional rollercoaster and on really hard days, the thought of you all keeps me going, honestly. I'm so grateful for you.

The Sweetest Fundraiser!

I think you would all like to hear about one particular donation we received last month.

A couple weeks ago, I got the following email:

"Hello! My name is ---------, and I'm a local elementary school teacher.

Last week, my school --------------- participated in The Great Kindness Challenge and did a penny wars fundraiser. Our class earned the most points in this fundraiser and we were given the opportunity to choose a charity or organization to donate all funds to. My students chose to donate it to Damian. I too am a mother of a young child, and I've seen your fundraising posts on Facebook and around town. I am so happy to be able to give to Damian!

As a school, we were wondering what would be most convenient to provide the donations. We raised about $1,900 and it is all cash. We can give it as cash, or if it is easier we can exchange it to check or give through one of your donation websites (I saw them listed online). Regardless of which, my class has made some cards too that we would like to give to your family and Damian.

Please let me know what is easiest and how we can get everything to you!

Wishing your family all the love and success through this journey,


5th & 6th Grade Teacher

----------------- Elementary"

As you can imagine, my heart BURST when reading this! Fast forward to last Friday: Damian and I were able to go to this school to accept their donation in person and meet the kids in the class and have a little Q&A with them. OH my heart!!!

We were apparently a surprise visitor to their class that day. I wasn't sure how much they knew about our story when I wheeled Damian (in his stroller) to the front of the classroom. But as the 30-or-so ten-year-olds trickled in (recess was just ending) I heard so many kids excitedly say, "Is that Damian??" "It's Damian!!"

I was so so touched by how excited they were to see us and so impressed with how smart their questions were. They wanted to know the specifics of Damian's disease, asked so many follow-up questions, and even began strategizing about how to get past the blood-brain barrier! They were so eager and so excited to be able to help!! They also asked a bunch of questions about Damian's favorite toys, songs, and shows and they had wonderful suggestions for parade floats (more than half of the class remembered our floats from the past two Fourth of July parades!).

When we wrapped up, their incredible teacher asked the class if they were happy with the surprise she had been teasing to them all week. After the class responded with "yes!" one boy added seriously, "This was the best surprise visitor we could have gotten," and many of the kids nodded in agreement.

Y'all, I am not a crier but my heart melted into a puddle in that moment. WOW these kids made us feel special!! Damian absolutely loved it, by the way, and was so content the whole time to watch all these kids talk and interact.

Kids are so amazing. They are my favorite people. And these ones were truly exceptional!

They had each made a card for Damian to take home and I could tell just how much thought went into them. We loved looking through them together!!

Y'all. People are so good. And if these young people are any indication, I think the future is in good hands.

Love you all!!!


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