Name

OrphaCure

About

D: Candice Wu - Candice Wu was born in Hong Kong and discovered her love for fashion as a child. With encouragement from her family, she moved to the United States at 17 to pursue her dream. After receiving her business degree, Candice graduated from the Boston School of Fashion Design. Her designs are greatly inspired by a mixture of cultural influences, especially her traditional Chinese parents and her British educated grandparents. She loves to blend traditional elements with modern ideas when creating her functional and artistic pieces. When it comes to fashion design, Candice does it all. She sketches, creates patterns, sews, drapes, beads and fabricates all of her one-of-a-kind pieces. Several fashion events have featured Candice’s work including The TENT Boston Fashion Week, New York Fashion Week, StyleWeek Northeast, Rhode Island, Project Ethos Hollywood CA, Project Beethoven at the Boston Symphony Orchestra, the Ovations for the Cure fashion charity event, American red cross charity event, and the Catwalk for a Cure charity event benefiting Susan G. Komen. In addition, her work has graced the pages of Upscale Living magazine, Boston Magazine, Boston Globe, as well as being featured on Fox25, and several national print magazines and broadcast media. She has received the Certificate of Recognition from Boston Mayor Thomas M. Menino. She is also the consecutive winner of the Boston Fashion Award both 2012 and 2013.



S: Christopher Gibson, Ph.D. - Chris Gibson is a bioengineer who is dedicating his life to discovering treatments for rare genetic diseases. Chris was trained in both bioengineering and business at Rice University, before moving to Utah for MD/PhD training. During his PhD research, Chris used engineering approaches to solve molecular biology challenges. He worked under the guidance of Dr. Dean Y. Li to understand how the vasculature maintains its stability. Their work was published in major journals including Nature and the Journal of Clinical Investigation. As part of this work, Chris studied a genetic disease called Cerebral Cavernous Malformation (CCM). CCM can lead to a variety of neurological symptoms and often results in hemorrhagic stroke, a devastating manifestation of a terrible disease. Chris designed a drug discovery platform to identify known drugs that could be repurposed to treat CCM. Two drugs were identified with efficacy in both human cells and animal models of CCM disease, and one of those drugs is now the subject of a collaboration with the Mayo Clinic (with Dr. Kelly Flemming) to evaluate whether it might intersect the pathophysiology of the disease in human patients. Though expected to return to finish medical school in July 2014, Chris instead started a company, Recursion Pharmaceuticals, to try to use a scaled-up version of his drug discovery platform to identify drugs that could be repurposed to treat hundreds of rare genetic diseases. Chris' mom is a fiber and mixed-media artist, so he has always appreciated the way in which art can inspire science and vice-versa.








A Note from Candice
Rare disease also referred to as orphan disease, most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.



Since I had the honor of involving in this project, I grew more strongly that this collaboration is very meaningful and important process. I am writing to alert and encourage people to raise awareness of rare disease among the community and create an environment with better care and knowledge that can lead a healthy life. I hope that this project will engage individuals with diverse abilities in order to promote full participation in community life and helping others along the way.



You can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not even being studied by any medical researchers.
Many rare diseases are serious. Many are life threatening.



The most heart touching story I have heard is from the girl who suffers from the rare disease . She is a typical teenager with full of life, but battling a devastating genetic condition.
After we posting the inspiration board on Instagram she immediately became one of our followers and shared her story.



Here is her post” do not judge a girl on what you can see. She may be fighting cancer, or an incurable disease, she could be a girl in chronic pain. she comes in many forms. She is breathing, but she is hurting. She may look young, but she feels decades older. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, when she can, and sometimes when she can’t. she is, but she is not, all at once. She is here, but part of her is missing. She fights a battle you will never see. But if you can take a moment to look beyond the smile, you might see that the girl is me.”



Together we will fulfill our duty of cherishing every human life that suffers from this condition.

Specialties

  • descience