May 15 Is International MPS Awareness Day
From “getting messy” in a workshop to participating in an art class, supporters globally are marking MPS Awareness Week, observed May 10-16. May 15 is International MPS Awareness Day.
Awareness and education are vital to increasing the recognition, diagnosis, understanding, and management of mucopolysaccharidosis (MPS) disorders such as Sanfilippo syndrome, which is MPS type 3. MPS diseases are thought to affect one in 25,000 individuals, although some disorders often go misdiagnosed or undiagnosed.
For its part, the U.K.’s MPS Society is asking supporters to help heighten MPS awareness by sharing stories about what MPS means to them and their families. It’s also encouraging them to create a Facebook fundraiser to contribute to the nonprofit organization’s support of MPS families through research, education, and other programming.
Participants also may get involved by asking local publications to publish their stories. The organization is providing a sample request letter for newspapers and other outlets, which reads, in part:
“This week is MPS Awareness Week, and myself and national charity the MPS Society, which supports 1,500 families with rare diseases in the U.K., are raising awareness of the conditions and is asking for donations to help give children earlier diagnoses and access to better treatment. For many children, shielding has led to anxiety and loneliness, while treatment ‘holidays’ have meant increased pain and fatigue.”
Other ways to participate include using a special Facebook frame, thanking those who helped out during the COVID-19 pandemic, or “getting messy” with the organization’s blue-themed messy play workshop. Other opportunities include officially pledging support for finding MPS cures, joining the society’s Easy Does It art class to paint a blue night scene, wearing something blue, and sharing why it’s important to support those with MPS and related diseases.
Meanwhile in the U.S., the National MPS Society is presenting “A Night Off Broadway Virtual Gala” on May 15, International MPS Awareness Day. The event will raise funds for research and family support programs and honor those in the battle against MPS.
The affair will feature musical performances from Broadway shows including “Jersey Boys,” “Mamma Mia,” and “Beautiful.” There also will be a live and silent auction. General admission tickets are $100 ($50 for families affected by MPS).
MPS diseases are rare genetic disorders that are present at birth, although symptoms may not manifest until early childhood before worsening progressively. Such symptoms can affect different parts of the body including airway passages, ears, facial features, the skeleton and joints, eyes, the liver, the heart, and in some cases, the brain.
Diagnosis of MPS diseases is often delayed since there is no specific checklist of wide-ranging MPS symptoms to reference. That’s compounded by the fact that symptoms, and their severity, can differ from patient to patient.