MPS Awareness Day

May 15, 2020

To commemorate 45 years of the National MPS Society, we’ve set a goal of raising $45k in 45 days, leading up to MPS Awareness Day on March 15, 2020. This year’s theme, “Chase the Signs,” is about bringing awareness to all of the different signs that lead to diagnosis of MPS and ML.

Below you’ll find a list of virtual events and activities we’ve created to raise awareness and spread the word. You’ll find fun things like facebook frames and challenges, spotify playlists, and digital jigsaw puzzles. And it all culminates on May 15th with our Virtual Yacht club Party. Don’t forget to register and we hope to see you there!

Celebrating 45 Years with $45k in 45 Days

Join the National MPS Society as we approach International MPS Awareness Day – May 15, 2020. This year, as we celebrate 45 years of serving families, we hope to raise $45,000 in 45 days for our Family Support programs.

These programs provide access to critical resources for those with MPS and ML. Programs include assistance for durable medical equipment, medical travel assistance, continuing education scholarships, conference scholarships, bereavement and more.

Learn more about our programs and families…
Make a contribution today…

Virtual Yacht Club Party

Join us on MPS Awareness Day!… that’s Friday, May 15th at 8pm ET/5pm PT, for an all-ages cocktail party on the “Zoom Deck!”

We had to stay safe in the harbor this year. So until our Maritime Gala comes back around in 2021, we’re gathering on ZOOM video chat for a “Virtual Yacht Club Party”… and you’re invited!

We’ll have music, virtual games, mix-along “courage cocktail” making sessions (kid & adult versions), and overall good cheer to commence MPS Awareness Day. Casual attire, of course, but make sure to add some yacht club flair and accessories to your ensemble! Throughout the party, we’ll be making our final push to $45k to fund our family support programs.

RSVP HERE to register and get the ZOOM link!

Facebook Profile Frame

Add our #ChaseTheSigns frame to your Facebook profile photo! For the months of April and May, framing your photo with our MPS Awareness Day frame will help create awareness throughout the MPS community and beyond. Just click on your Facebook profile photo to “Add Frame” and search for “Chase the Signs” or “National MPS Society.”

Digital Jigsaw Puzzles

The quarantine puzzle renaissance is here! Join the fun in a unique way with our MPS Awareness Day digital puzzles! They’re a great way to pass the time, with or without the kids, and a great way to spread the word about chasing and identifying the signs.

Each puzzle is easy to use, but challenging to figure out. There are too different skill levels for each one and you can customize your own as well. Print out the completed puzzle for a bonus maze activity for the kids!

Chase the Signs Maze puzzle – EASY, HARD
MPS Awareness Birds puzzle – EASY, HARD

Spotify Playlist

There are so many ways we can be helped by music these days. The COVID-19 pandemic continues to take its toll on all of us and we thought you could use a soundtrack or two to help you through these continued days of isolation.

Our #ChaseTheSigns Spotify playlist is a fun and heartfelt blend that will have you listening closely to figure out the symbolism or tie-ins with each song. It’s public and free, so we encourage you to listen, follow, and share with others. It’s an eclectic mix that may make you smile, dance, tear up, or evoke many other emotions. We hope it can play a small part in helping you through these challenging times…

Facebook Challenge

The road to diagnosis is often a difficult and winding “maze.” It is often a race against time and symptoms in which we are “chasing the signs.” If you or someone close to you is affected by MPS or ML, help us grow awareness of the signs by taking part in our Facebook Challenge!

Simply take a photo holding a sign of you or your child’s age at diagnosis. Post it on Facebook with the text below, swap in your signs and info, and tag 5 more people you know to do the same.

( x years, x months and x days)… that’s how old (name) was when he was diagnosed with (MPS I Hurler Syndrome).

We are posting this to raise awareness for MPS, ML, and the signs that lead to diagnosis. Our signs that led to diagnosis were (sign), (sign), and (sign). Along with the National MPS Society we are challenging (facebook friend), (facebook friend), (facebook friend), (facebook friend), and (facebook friend) to spread the word and #ChaseTheSigns, leading up to MPS Awareness Day on May 15, 2020!

Copy and paste this text with your own photo, signs, and age of diagnosis. Then tag FIVE more people and challenge them to do the same!

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs