- Categories:
- Health
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- AwarenessDiseases
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- International
- Date change rule:
- Every May 15
- Holiday emoji:
- 🎗️
MPS Awareness Day shines a light on Mucopolysaccharidosis disorders every May 15. This annual observance raises global understanding of these rare genetic conditions, emphasizing early diagnosis and ongoing support. Join the movement by sharing facts, supporting research, and advocating for affected families.
Want to sponsor MPS Awareness Day? Learn how
Expected MPS Awareness Day Deals
As a cause-driven observance, MPS Awareness Day focuses on fundraising and advocacy rather than commercial deals. Organizations like the National MPS Society and the MPS Society (UK) encourage donations and participation in awareness campaigns. Many pharmaceutical companies, such as Sanofi Genzyme, Takeda, and BioMarin Pharmaceutical, which develop treatments for rare diseases, often highlight patient support programs and research initiatives. Look for opportunities to donate to patient advocacy groups, participate in virtual walks or runs, or purchase merchandise where proceeds benefit MPS research. We will update this page with confirmed live campaigns as May 15 approaches.
Platform Guide for MPS Awareness Day
Tag @nationaltoday_ and use #MPSAwarenessDay. Share infographics about MPS, patient stories, or photos from awareness events.
Mention National Today (facebook.com/nationaltoday) and use #MPSAwarenessDay. Join community groups, share personal experiences, and promote local fundraising events.
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Mention @NatlToday and use #MPSAwarenessDay. Amplify research news, advocate for policy changes, and share real-time updates from global campaigns.
MPS Awareness Day Hero
The MPS Community
History of MPS Awareness Day
Mucopolysaccharidosis (M.P.S.) is a group of metabolic disorders caused by the lack of specific enzymes required to break down sugar carbohydrates that aid in bone, skin, and connective tissue building. Individuals with M.P.S. fail to produce enough enzymes needed to break down these sugar chains into simpler molecules or produce enzymes that do not work properly. This results in permanent damage to cells and affects an individual’s physical appearance, organs, and system functioning.
There are many forms of M.P.S., and their prevalence is estimated to be one in 25,000 births. The first description of the disorder was made in 1917 by Dr. Charles Hunter, who identified M.P.S. Type II. By 1919 Gertrud Hurler identified and described two cases similar to Hunter’s observation, and her findings led to the Hurler and Hunter Syndrome discovery. The diseases were considered to be the same in 1968. In that same year, the Hunter Syndrome was considered a less severe variant of the Hurler syndrome. By 1978, Lorincz released a publication distinguishing both diseases as two separate disorders. It was only in 1968, that the disorders were hypothesized to be due to poor mucopolysaccharide breakdown.
In present times, seven distinct clinical types, and numerous subtypes, of mucopolysaccharidoses have been identified. Although each case of M.P.S. is clinically different, most patients have a period of normal development followed by a decrease in physical or mental function. Depending on the M.P.S. type, individuals may experience cognitive deficits, developmental delays, or severe behavioral issues. Many people suffer from hearing loss, neurosensory damage, or both. Unfortunately, there is no cure for these disorders, the treatment utilized is aimed at improving the individual’s quality of life.
MPS Awareness Day timeline
The first description of M.P.S., discovered by Dr. Charles Hunter, is named “Hunter Syndrome.”
Gertrud Hurler identifies and describes symptoms similar to the conditions identified in Hunter Syndrome.
The Hurler and Hunter Syndromes are identified as a buildup of mucopolysaccharidoses.
The National M.P.S. Society is founded to promote patient advocacy, genetic counseling, and other services to M.P.S. patients and families.
How Businesses Can Celebrate MPS Awareness Day
Local businesses can play a meaningful role in supporting MPS Awareness Day by raising visibility and funds for the cause. Consider hosting a ‘Round Up for Research’ campaign at checkout, where customers can donate spare change to a local MPS support group or the National MPS Society. Businesses can also display educational materials about MPS disorders, share facts on their social media channels, or organize an employee education session to foster understanding. Partnering with patient advocacy groups for a joint awareness event or sponsoring a local walk/run are also impactful ways to contribute to this vital cause.
MPS Awareness Day FAQs
When is MPS Awareness Day?
In 2027, MPS Awareness Day will be observed on Saturday, May 15. The weekend placement provides an excellent opportunity for community events and broader participation in awareness campaigns.
How many people are affected by MPS disorders?
While exact figures can vary by region, it is estimated that around 1 in 25,000 babies are born with an MPS disorder. Ongoing research and improved diagnostic tools continue to refine these prevalence estimates, highlighting the importance of continued awareness.
What is the goal of MPS Awareness Day?
MPS Awareness Day aims to foster a global community committed to finding cures and improving the lives of individuals with MPS. It serves as a platform to highlight research advancements, advocate for better access to treatments, and ensure no family faces these rare conditions alone.
What are Mucopolysaccharidosis (MPS) disorders?
MPS disorders are lysosomal storage diseases, meaning they result from a defect in the lysosomes, the ‘recycling centers’ of cells. Without the correct enzymes, the body cannot properly dispose of waste products, impacting various bodily systems and leading to a range of symptoms.
How to Observe MPS Awareness Day
Volunteer
Visit the M.P.S. Society website and apply for one of the many available volunteering opportunities in your area. Get your friends and family involved in the process. The more the merrier!
Make donations
Giving back to your community can go a long way! You can join in the observation of M.P.S. Awareness Day by making donations to organizations affiliated with M.P.S. research and advocacy.
Spread awareness on social media
Share in the celebration by spreading awareness on social media. Share information about M.P.S. and use the appropriate tags.
5 Interesting Facts About M.P.S.
It is genetically inherited
M.P.S. is a hereditary genetic disorder.
Its severity varies
The severity of M.P.S. symptoms varies in individuals.
M.P.S. VII
M.P.S. VII, or sly syndrome, is the least common type of M.P.S.
Urine test diagnosis
M.P.S. can be diagnosed from clinical examination of Mucopolysaccharidosis in urine.
Enzyme replacement therapy
Enzyme replacement therapy is used as a treatment for M.P.S. to reduce non-neurological pain and symptoms.
Why MPS Awareness Day is Important
We love to care
We care about those who have lost their lives to M.P.S. M.P.S. Awareness Day allows for the remembrance of people with M.P.S. disorder who have passed away over the years. We also stand with those who are currently suffering from M.P.S.
Spreads Awareness
M.P.S. Awareness Day aids in raising global awareness about the condition. It also promotes collaboration in research and education on M.P.S.
Creates Community
M.P.S. Awareness day creates a community for friends and families whose loved ones have M.P.S. Communities can come together to share their stories for support and encouragement.
Social Media Tips for MPS Awareness Day
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