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We are about to hit $1 MILLION!!!!

Happy Rare Disease Day INDEED!!!!

We had a goal this month to finally hit $1 million in total fundraising for our campaign and we very well may hit it TODAY, on Rare Disease Day (February 28th)!!!

As of now, when I'm posting this, we just have $10,000 to go!!!!!

Want to help? Here's how!

Yesterday on Instagram, I posted a new reel that - in less than 90 seconds - details our mission to develop the final treatment for Damian and all babies fighting ASMD and invites people to donate $28 on February 28th. Please share it on your own social media! Even if you shared it yesterday, you will reach new people by sharing it again today! (I can guarantee you have some friends who weren't on Instagram at all yesterday and missed your story!)

Leveling up your Instagram stories

People tap through stories - they just do. Since stories are largely just going to be skimmed through, designing it in a way to capture attention in a millisecond could possibly give you a wildly more positive response. (In the visual instructions above, you can customize the story on step 4)

Here are some of the most effective ways to encourage your followers to take action on an Instagram story:

  • Include a link! I typically include a link to our GoFundMe (To add a link, tap the sticker icon - the square with the smiley face and upturned corner - and then scroll down to where it says "LINK". Then type in or paste in the URL). This will likely make the BIGGEST difference in whether someone donates or not because it's become that much easier for people to do so.

  • Type in our account name @PleaseSaveDamian as clickable text so people can tap it to go to our profile.

  • Include your own words & ASK them to take action - When your followers hear YOUR connection to us, our story becomes "closer" and more meaningful to them. Additionally, a call to action tells them right away what the goal is.

  • Post it multiple times. Feel free to do the exact same thing twice in a row. Or if you want to make it more meaningful, you could try splitting "your own words" into two separate thoughts or sentences. You could also do it a couple times throughout the day or send your followers updates on how close we are getting!

Here is an example of what an Instagram story could look like (feel free to copy this exactly if you want to!):

Sharing with Social Media Influencers

I'm going to be doing a lot of this today! People with large followings not only can spread the word out fast to a lot of people, but many of them tend to garner great immediate results if they have a really devout audience.

I have found that sincere and nice messages are the best way to go. Also, the first couple words of the message are what show up in their inbox, so make sure those words would stand out among a sea of inbox messages that start with "Hi so-and-so!" My suggestion for reaching out and asking an influencer to share our reel is something like this (the more customized the last sentence is, the better):

Would love to know if you would be willing to share something for Rare Disease Day (today, Feb 28th!)? My friend Brittany has been raising funds for treatment for her 3-year-old son with a terminal rare genetic disease and she is SO CLOSE to reaching her $1 million milestone - she's just $10,000 short! I know your community would be excited to help, especially for Rare Disease Day! Here's a reel from Brittany that explains everything - even just sharing this reel would be SO helpful!! Thank you so much, I am a longtime follower and just love your content!

To share the reel with them, follow all the instructions shown on the visual instructions earlier in this blog post until step 3. Instead of selecting "Add reel to story," tap on the search space above and type in the influencer's name. Then tap on the circle to the right of the name to place a checkmark, then tap the "Send" button at the bottom.

We're Doing This!!!

Thank you all SO MUCH!!! I'll be giving regular updates throughout the day on Instagram stories, so make sure to check in so we can all celebrate together! It's going to be a BIG DAY!!!

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