BOSTON, Sept. 28, 2017 /PRNewswire/ -- "I've never heard of that." In the rare disease world, this statement is anything but rare. But for people living with MPS, mucopolysaccharidosis, and ML, mucolipidosis, it's important for people to know what these diseases are and what they do to those affected.
MPS and ML are genetic lysosomal storage diseases (LSD) caused by a missing or insufficient enzyme that prevents cells from recycling waste, causing materials to be stored in the cells. This leads to widespread damage throughout the body, affecting joints and organ systems. Of the 11 syndrome types, only four have treatments and none has a cure. Since 1999, the National MPS Society has funded a total of $6.9 million for medical research, and the goal is to continue that funding until we find cures for these devastating diseases.
To help raise awareness and funds for medical research, the National MPS Society will hold A Night Under the Big Top gala event to help raise money for rare disease research on Oct. 14 from 6 to 10 p.m. at the Revere Hotel in Boston.
"We are excited to host the National MPS Society's inaugural gala in Boston," said Terri Klein, ML mom and the society's fund development director. "A Night Under the Big Top will help fund critical research and additional programs that will benefit families from coast to coast. This event will bring industry leaders, physicians, researchers, MPS families and the community of Boston together for one evening to elevate the needs of the rare disease population."
The black-tie optional event features The Boston Circus Guild performing a '20s-themed, Speakeasy Spectacular, with a live band. Live and silent auction items will be available, and the event will include cocktails, appetizers and a seated dinner. All proceeds go to benefit MPS and ML research. Tickets are $150, and tables are available for large groups. For tickets and information, please click here.
About the National MPS Society
The National MPS Society exists to cure, support and advocate for MPS and ML. We provide hope and support for affected individuals and their families through research, advocacy and awareness. For information, please visit www.mpssociety.org.
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MPS and ML are genetic lysosomal storage diseases (LSD) caused by a missing or insufficient enzyme that prevents cells from recycling waste, causing materials to be stored in the cells. This leads to widespread damage throughout the body, affecting joints and organ systems. Of the 11 syndrome types, only four have treatments and none has a cure. Since 1999, the National MPS Society has funded a total of $6.9 million for medical research, and the goal is to continue that funding until we find cures for these devastating diseases.
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To help raise awareness and funds for medical research, the National MPS Society will hold A Night Under the Big Top gala event to help raise money for rare disease research on Oct. 14 from 6 to 10 p.m. at the Revere Hotel in Boston.
"We are excited to host the National MPS Society's inaugural gala in Boston," said Terri Klein, ML mom and the society's fund development director. "A Night Under the Big Top will help fund critical research and additional programs that will benefit families from coast to coast. This event will bring industry leaders, physicians, researchers, MPS families and the community of Boston together for one evening to elevate the needs of the rare disease population."
The black-tie optional event features The Boston Circus Guild performing a '20s-themed, Speakeasy Spectacular, with a live band. Live and silent auction items will be available, and the event will include cocktails, appetizers and a seated dinner. All proceeds go to benefit MPS and ML research. Tickets are $150, and tables are available for large groups. For tickets and information, please click here.
About the National MPS Society
The National MPS Society exists to cure, support and advocate for MPS and ML. We provide hope and support for affected individuals and their families through research, advocacy and awareness. For information, please visit www.mpssociety.org.
View original content:http://www.prnewswire.com/news-releases/patient-advocacy-organization-hosts-circus-themed-fundraising-event-in-boston-300525897.html
SOURCE The National MPS Society
