Meet the National MPS Society 💜
For more than 50 years, we've been dedicated to improving the lives of individuals and families affected by mucopolysaccharidoses (MPS) and mucolipidosis (ML)—rare, genetic conditions that impact multiple systems of the body.
Through research, advocacy, and community support, we’re working toward better care, better treatments, and a brighter future.
✨ Learn more at mpssociety.org
@mpssociety
#MPS #ML #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
For decades, the National MPS Society has brought families together through conferences, support programs and advocacy initiatives. But as leaders at the organization listened more closely to the community they serve, one reality became increasingly clear in recent years: many families impacted by #mucopolysaccharidosis (#MPS) and #mucolipidosis (#ML) were still not being reached.
“We’ve always known the importance of getting families and people together,” says Terri Klein, President and CEO of the National @MPSSociety . “But what if we could bring families together that we didn’t already know – families who may not be members of the Society, who may not be connected in other ways, and who may have more need?”
A new approach to community outreach called Crossing Paths emerged as a response to help proactively find families, listen to their realities, and begin breaking down barriers to care and connection. Rather than waiting for families to find the organization, Crossing Paths brings the National MPS Society into neighborhoods and communities across the country where engagement has historically been the lowest, creating welcoming, local gatherings designed to foster trust and understanding.
More than three years in, the team has held 18 Crossing Paths events across the country that have helped bring more families into the fold, driving greater equity and contributing to a more holistic understanding about the needs of the community.
“Our biggest learning from Crossing Paths has been that we don’t know what we don’t know. And so we have to listen to the community,” says Leslie Urdaneta, Director of Family Support and Pathways at the National MPS Society. “We have to listen to these families first.”
Click the link in our bio to learn more about Crossing Paths in the second installment of our two-part video series on the National MPS Society’s community programming.
When DeAnna and Alex learned that their daughter Savannah was living with #mucopolysaccharidosis type VI (MPS VI), just weeks before her third birthday, the diagnosis landed with a mix of fear, uncertainty and isolation.
“We weren’t really sure what to expect,” DeAnna recalls. “It was depressing, for lack of a better word. It was deflating. You felt very alone.”
Like many facing a rare condition, the DeAnna and Alex were suddenly navigating unfamiliar medical terms, unanswered questions and a future that looked very different from what they had imagined. Hope only began to emerge when they contacted the National MPS Society, a patient advocacy organization serving families impacted by #MPS and #mucolipidosis (ML) across the United States.
The family was among the first to receive support through the organization’s Pathways Program, an innovative initiative designed to meet families where they are in the earliest – and often most overwhelming – days following diagnosis. Launched in 2018, Pathways provides free face-to-face guidance from trained professionals for the first year following diagnosis. The program offers education, emotional support and practical resources, while linking families and individuals to a broader community of people who understand the realities of living with MPS or #ML.
Cliok the link in our bio to learn more about Pathways in the first edition of our two-part video series highlighting the @mpssociety 's innovative community programming.
We are still feeling the impact of MPS Awareness Day yesterday, and we want to say thank you 💜
Because of YOU—your posts, your shares, your conversations, your advocacy—MPS and ML were seen, heard, and celebrated in powerful ways. Awareness doesn’t happen by chance. It happens because our community shows up, and yesterday, you showed up in a big way.
Thank you for your courage, your passion, and your continued commitment to this mission. We carry the energy of yesterday forward with us as we keep working together to make a difference.
#MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
Amazing things happen when our MPS and ML community comes together! As we celebrate International MPS Awareness Day today, members across the country have been successful in getting state and local proclamations. Board members Angela Holland and Sheri Lueb joined others in Oklahoma to celebrate and recognize this special day! 💜
Shout-outs to Zeke (MPS I), Carissah (MPS VI), and Sheri (MPS IVA) for their advocacy! 🦓🧬 If you've gotten a proclamation, drop your state in the comments, too! #MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
Don't have time to show us your moves today? You can still make an impact!
📱 Text BOOGIE4MPS to 44834 or visit our website to make a gift in honor of your loved one with MPS or ML and help us support those who need it the most: /give
#MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
May 15 In September 2023 Nolan started a job at Bitty and Beau’s Coffee shop in Boulder, Co, unfortunately the business had to close it’s doors in September 2025.
Nolan started college at Flatirons College/Southeastern University in August 2023 where he just completed his second year.
Our story continues on and Nolan fights courageously for a “normal” life, someday free of pain.
My courageous, determined, all heart kiddo is my superhero💜 he may not wear a cape, fly, have super powers or leap tall buildings but he fights everyday for a better life, to be treated just like everyone else, to have friends, to defend others who need defending. I love this boy with all my heart.
Today we wear purple to honor Nolan and those who live with MPS. We wear purple to remember those who fought with courage. I have posted for the last 15 days as I do every year. I try to give you a small peak into Nolan’s world. The MPS world, the place my family and many friends have lived for the last 23 years. I left so much out, many surgeries, hospital stays, appointments, medications, missed holidays, birthdays and so much more. I don’t post this for your sympathies or to elevate my son and all that he has accomplished, I share to raise awareness of a rare disease that has taken so much of my child’s life away from him, I share so funds can be raised to help find a cure, I share so that if someone is given the diagnosis of mucopolysaccharidosis that they will have hope when they hear our story, that someday when they hear those words they will be told there is a cure💜. Please share our story, spread the word, donate to the MPS society, and wear purple to raise awareness.
#thisisourstory #MPSAwareness #mpssociety #nolanstrong
#wewearpurple hope
courage
@mpssociety
IT'S TIME TO BOOGIE! 🪩✨
Today is #MPSAwarenessDay! We're so excited to celebrate with everyone, and even more grateful to be a part of your journey. We can't wait to see all of your grooviest moves and creativity. Share your best dance moves with us all day long so we can help raise awareness for MPS and ML 💜
#MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
💜 1 Day Until International MPS Awareness Day 💜
Tomorrow, we BOOGIE! 🪩✨
There are so many ways to join us for International MPS Awareness Day and help raise awareness for the MPS and ML community:
🎶 Share your Boogie for MPS videos (link in the bio)
👕 Grab your Boogie for MPS shirt before they’re (link in the bio)
📱 Text BOOGIE4MPS to 44834 to make a donation that supports families, advocacy, and research
Most importantly—help us spread the word. Every post shared, every dance move uploaded, and every conversation started helps more people learn about MPS and ML.
Let’s make this our loudest, brightest, most joyful awareness day yet. 💜
#MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
💜 2 Days Until International MPS Awareness Day 💜
Our community is full of stars—and some of our brightest are the incredible families grooving for MPS this year! ✨🕺💃
From living room dance parties to joyful spins, wiggles, and twirls, these amazing people remind us why we celebrate this day every year. Their strength, spirit, and smiles inspire our entire community.
Keep dancing, keep sharing, and keep raising awareness with us as we count down to the big day! Don't forget to show us your moves (link in the bio).
#MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
💜 3 Days Until International MPS Awareness Day 💜
For 21 years, our community has come together to shine a light on MPS and ML. Since 2006, International MPS Awareness Day has helped families feel seen, advanced conversations around research and access to care, and united people around the world in hope and action.
While we love to look back on the many fun ways we've celebrated throughout the years, we also recognize that behind every campaign, every photo, and every shared story is something powerful: awareness that truly changes lives.
Because awareness leads to understanding.
Understanding leads to support.
Support leads to progress.
And together, this community has already accomplished so much. 💜
Thank you for helping us continue this movement for every individual and family affected by MPS and ML.
#MPSAwarenessDay #RareDiseaseAwareness #BoogieForMPS #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
💜 4 Days Until International MPS Awareness Day 💜
Meet Aleyah (MPS I), who is turning spare change into real change for the MPS community through her annual coin drive: click the link in our bio to view her full story.
Every dollar raised helps fuel research, advocacy, and family support programs that bring hope to those living with MPS and ML. Aleyah reminds us that you don’t have to be a celebrity or host a huge event to make a difference—you just need heart.
Whether it’s a coin drive, lemonade stand, dance party, fundraiser, or sharing our message online, anyone can help move our mission forward.
As we count down to #MPSAwarenessDay, show us how YOU are helping us Boogie for MPS! 🕺💃
#BoogieForMPS #MPSAwarenessDay #RareDiseaseAwareness #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #RareDisease
