Join us on our mission to spread awareness and find a cure to this rare disorder.
MPS needs a CURE
WHAT IS MPS?
MPS is a rare genetic mutation in the gene code. It begins by attacking the skeletal system, eventually moving onto the cognitive and central nervous systems. Diagnosis is fairly simple; all it takes is a blood and urine sample. If this test was administered at birth, therapy could be started much earlier and the children in treatment would have a much higher success rate. The life expectancy of a child with MPS is between 10 – 15 years old but that age could increase significantly by adding it to the newborn screening. Currently, only 53 rare disorders are tested for at birth out of as many as 8,000, but even that number varies based on the state you are born in. Adding MPS to the newborn screening would give these children a better fighting chance to counteract its degenerative effects. It is progressive and incurable; thus enzyme replacement therapy is the only way to slow it down. It is vital for treatments to begin as early as possible because once the disorder gets to the brain, there is nothing that can be done and the patient loses all cognitive functioning. Educating the public on MPS is where we choose to begin our fight. The rarity of this disorder makes it virtually unknown in society. This means very little research is being done into a cure, or even treatments to slow its progress. It also means nothing can be done to make sure it is caught early enough. Getting the word out about MPS is a great start but we need your help to actually make change happen.
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
Educate – Eradicate – Accommodate –
MEET RYLEE NOBLE
At 17 years old, Rylee Noble enjoys dancing, laughing, and going to concerts—embracing life with the same enthusiasm as many teenagers her age. But Rylee’s journey has been anything but typical. At just 10 years old, she was diagnosed with Mucopolysaccharidoses (MPS), a rare genetic disorder that affects the body’s ability to break down certain complex sugars. While there are several subtypes of MPS that vary in severity, Rylee has a less severe form. However, the disease is progressive and currently incurable.
To help slow the progression of MPS, Rylee undergoes weekly Enzyme Replacement Therapy. Though this treatment helps manage symptoms, it cannot fully stop the disease—especially its effects on the central nervous system. On May 14, 2024, Rylee underwent mitral valve replacement surgery, a reminder of the serious complications that can accompany MPS. Despite these challenges, she remains hopeful, dreaming of a cure or a breakthrough treatment capable of crossing the blood-brain barrier to address neurological damage.
Rylee’s strength and gratitude inspired the creation of A Noble Journey, a fully nonprofit organization founded in 2022 by her mother. What began as one family’s determination to create a better future for their daughter has grown into a mission that represents countless children battling MPS and other lysosomal storage diseases.
A Noble Journey is dedicated to advancing research, raising awareness, and supporting medical innovation. The organization has established an endowment at Children’s Memorial Hermann Hospital to help launch a Lysosomal Storage Disease Unit in partnership with Dr. Paul Hillman, MD, PhD. In addition, the nonprofit supports the research of Dr. Akihiko Urayama, PhD, Associate Professor of Neurology at McGovern Medical School, whose work focuses on transporting therapeutic agents across the blood-brain barrier—a critical obstacle in treating the neurological complications of lysosomal storage diseases.
With no paid board members, A Noble Journey ensures that every donation goes directly toward education, research, and efforts to eradicate MPS. While a cure may not come in time for Rylee, her family is committed to building a legacy of hope—one that strives to free future generations from the burden of this devastating genetic disease.
Through courage, compassion, and commitment, A Noble Journey continues to transform one young woman’s fight into a powerful movement for change.
Join our team of incredible supporters!
There is no better family and no better cause to get behind than Rylee and a Noble Journey.
Alan ThomasOwner & President, EBT Bearings
We believe in Rylee’s message and we want to help get it to people who have not been affected. Everyone knows about Cancer but no one knows about MPS until it hits home.
Tanya SwailsRegional HR Director for Adurra/LVN