Bennet Announces Resolution to Designate May 15 as National MPS Awareness Day

Washington, D.C.  – Today, Colorado U.S. Senator Michael Bennet announced a resolution to designate May 15 as National Mucopolysaccharidosis (MPS) Awareness Day. MPS and Mucolipidosis (ML) are genetic, lysosomal storage disorders that cause permanent, progressive cellular damage. This affects the individual's appearance, physical abilities, organ and system functioning, and in most cases, mental development. Bennet’s staff recently met with Cooper Tippett and Jack Fowler, two individuals affected by MPS and being treated at Children’s Hospital Colorado.

“I’m pleased to announce this resolution today to increase awareness of MPS,” said Bennet. “Jack and Cooper are two inspiring young individuals in Colorado who have been diagnosed with MPS. I hope this resolution will help uplift stories like theirs and shine a spotlight on this disorder for which there is currently no cure.”

"We are very excited for MPS Awareness Day to shine a light on the MPS and ML community.  We sincerely thank Senator Bennet for recognizing our plight and standing with our rare disease community. Through increased awareness and research, together we’ll make better outcomes for kids like Cooper and Jack,” said Christine Tippett, Cooper’s mom. 

“Jack’s infectious smiles reminds me that no matter how small (rare) a person is, that one contagious smile can travel the earth.  And his has touched many and more then I will ever know,” said Jamie Fowler, Jack’s mom.

Estimates indicate that approximately 1 in every 25,000 babies born in the United States will have some form of MPS. Currently, there is no cure for the disease, but enzyme replacement therapies are a common treatment to reduce non-neurological symptoms and pain. Children suffering from more severe forms of MPS rarely live past 15 years of age. 

Because the specific signs and symptoms seen in MPS are highly variable, children with MPS often receive delayed diagnosis. In the United States, newborn screening for MPS I has been approved for inclusion in the Recommended Universal Screening Panel, although each state decides independently when or if it will be added. 

Bennet recently introduced the Accelerating Kids’ Access to Care Act to help families access life-saving care for children with complex medical conditions like MPS. This builds on Bennet’s Advancing Care for Exceptional (ACE) Kids Act, legislation that passed Congress and was signed into law in April 2019 to make it possible for health care providers to coordinate care, lower costs, and improve quality outcomes for children with complex medical conditions on Medicaid who require specialized care.

Children's Hospital Colorado currently treats nearly 30 individuals with MPS. Recently, members of Bennet’s staff met with two of the affected families, the Tippetts and the Fowlers. Jack Fowler suffers from MPS 2 - Hunter Syndrome, and has lost the ability to walk, talk and eat. 

 

(Jack Fowler and his mom, Jamie Fowler)

Cooper Tippett is 8 years old, and was diagnosed in 2014 with MPS IV A, Morquio Syndrome. Cooper receives weekly enzyme replacement therapy at Children's Colorado - a process that normally takes 5 - 6 hours. Cooper's prognosis is unknown, but it's unlikely he will grow any larger than he is in the below photo. 

 

(Cooper Tippett)

The text of the resolution is available HERE.