May is the month for MPS awareness!

Apr 7, 2024 | News, Upcoming Event

Every year May 15 is observed internationally, to raise awareness against mucopolysaccharidoses (MPS).

MPS are rare genetic disorders in children and adults caused by the absence of a specific enzyme. There are 7 types of MPS. It is estimated that 1 in every 25,000 infants born will have an MPS disorder. MPS conditions can affect nearly every organ in the body and can cause death unless treated early. 

IT’S ABOUT TIME – A Global Campaign

We are proud to partner with over 40 global organizations to raise awareness for MPS around the world. Together with our industry partners and within the International MPS network (IMPSN) we are rolling out a multichannel campaign “It’s About Time” , a global awareness initiative aimed at raising awareness about Mucopolysaccharidosis (MPS) diseases and advocating for improved access to treatment and support for affected individuals and families. 

The “It’s About Time” campaign will include a series of activities and events designed to raise awareness about MPS diseases, reduce stigma and promote understanding and acceptance of individuals with MPS, and advocate for improved access to treatment and research and innovation in the field of MPS diseases. Key components of the campaign will include the development of animated videos, social media campaigns, educational resources, and advocacy efforts.

In the context of the International MPS Day Campaign, the phrase “IT’S ABOUT TIME” serves as a double entendre, carrying two distinct yet intertwined meanings that encapsulate the urgency and significance of the cause: 
 
1. A Statement – Every Second Matters:
First and foremost, “IT’S ABOUT TIME” serves as a statement emphasizing the critical role time plays in the world of MPS. So many aspects of MPS are indeed about time, spanning from the imperative need for timely diagnosis, swift treatment, and continuous support throughout an individual’s journey with the condition. It underscores the reality that every moment counts in the lives of those affected by MPS. Delayed diagnosis can mean prolonged suffering, and timely intervention can make a world of difference. This aspect of the phrase highlights the importance of recognizing time as a crucial factor in the MPS community, where timely action can lead to better outcomes and an improved quality of life.
 
2. A Demand for Action – Shine a Light, Fight and Unite for MPS:
The second layer of meaning in “IT’S ABOUT TIME” represents a call to action. It’s an assertive demand for change in various domains. For instance, when we say, “IT’S ABOUT TIME that babies are diagnosed at birth,” we are advocating for the establishment of early screening programs that can detect MPS in newborns, ensuring swift intervention. Similarly, when we assert, “IT’S ABOUT TIME policy makers ensure equitable access to treatments and supports,” we are demanding that policymakers prioritize equal access to vital resources and therapies for everyone in the MPS community. This interpretation of the phrase underscores the need for immediate and impactful changes in the way we approach MPS, not just as a medical condition but as a societal responsibility.
 
In this clever play of words, “IT’S ABOUT TIME” encapsulates both the essence of urgency within the MPS community and the unwavering demand for proactive changes that can positively impact the lives of those affected by these rare genetic disorders. It becomes a rallying cry that resonates with empathy, compassion, and a determination to make a difference.

We will be posting animations, videos and social posts as part of this international campaign. For our message to go viral, we need it to be shared as widely as possible. Follow us on Facebook, Instagram or LinkedIn.

Find out more at MPS DAY – MPS Network

Learn more about the IMPSN here:  impsn.ca

Canada shines a light on MPS Day!

Iconic landmarks across Canada will light up in blue and yellow on May 15, International MPS Awareness Day. We extend our heartfelt gratitude to all the illuminating partners for extending their support to raise awareness for MPS across Canada.

Join is in raising awareness by taking a selfie in front of one of the iconic landmarks and share on social media with the hashtags #CanMPSSociety #NBS4MPS #MPSDAY #MPSAwarenessDay.

Photos from last year:

Canada Place, Vancouver, BC
Mississauga Clock Tower, ON
Niagara Falls, Canada
Niagara Falls, Canada
Burrard Bridge, Vancouver, BC
Science World, BC

Visit one of the many exciting iconic sites lighting up for MPS Day:

Alberta
Edmonton Bridge – 22 May
City of Red Deer’s City Hall (from sunset)
Calgary Tower

British Columbia
Bloedel Conservatory
BC Place, Vancouver (from sunset 14 May)
Canada Place Sails of Light, Vancouver
City Hall Port Moody
Fitzsimmons Creek Bridge, Whistler
Vancouver City Hall
Burrard Street Bridge

Ontario
3D Toronto sign (TBC)
Brant Street Pier, Burlington 
Civic Centre Clock Tower, Mississauga (from 8pm)
City Hall of Kingston 
CN Tower
Hamilton Signature Sign
Mississuaga Council
Niagara Falls (10:30 pm EST for 15 minutes) See it on The Live Cam! (TBC)
Oakville Town Hall
Riverwalk Commons, Water Street, Town of Newmarket

Quebec
Montreal Tower Lighting (TBC)

Make MPS Day Your Way!

Can’t make it to one of the iconic sites? Show your support and raise awareness for MPS by setting up your own illuminations! Light up your home, driveway, sidewalk, garden, office, and neighborhood in blue and yellow. (A flashlight with blue and yellow balloons over the light works wonders.)

Take pictures of your illuminations and share it on social media with the hashtags #CanMPSSociety #NBS4MPS #IgniteHope #MPSAwarenessDay #MPSDay

POST YOUR MPS STORY

Share your MPS story on your social channels and Make sure to tag us @CanadianMPSSociety so we can share your story on our channels too!

FACEBOOK Takeover with Rare Revolution Magazine 

The Canadian MPS Society is pleased to partner with Rare Revolution Magazine and participate in a social media Facebook takeover on Saturday May 13 just prior to MPS Day . Follow the Rare Revolution Magazine’s social media channel to learn more about MPS and the Canadian MPS Society. Support this campaign and help spread the word by sharing the posts using #CanMPSSociety and #RareRevolution. 

Canadian MPS Society: FacebookTwitterInstagram

Rare Revolution Magazine: FacebookTwitterInstagram