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Jessica Fabus Cheng

Heart & Hands

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won two FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease.

 

THIS IS MY STORY

Sixteen years ago - well before becoming a Registered Nurse and an instructor of Surgical Technology - I was diagnosed as a carrier of Duchenne Muscular Dystrophy.  Having carrier status affected every area of my life, and it meant that I had a 50% chance of passing the disorder on to future male children and a 50% chance of passing carrier status on to female children. Duchenne Muscular Dystrophy currently does not have a cure and carries a life expectancy anywhere from 16 to the early 30's.  For this reason, as well as several members of my family affected either as carriers or contending with the disorder themselves, I began working with Parent Project Muscular Dystrophy.  I serve as one of New York's Advocacy Captains, preparing families and individuals to advocate for research and funding on Capitol Hill and with their local congresspeople. 

 

My personal platform, "The Power of Your Story" encourages the sharing of personal experience as a powerful and effective advocacy tool.

 

In March 2021 I was able to virtually travel to Washington, D.C. to again advocate for families contending with Duchenne and raise my voice to help ensure neuromuscular and rare diseases remain a priority in our government.  I had the opportunity to interact with New York lawmakers and staff while standing strong with the families that make up the Duchenne muscular dystrophy community.

 

Additionally, I am proud to represent the New York City metropolitan area as a contestant in the 44th Mrs. New York America pageant on July 18th, 2021 in Rochester, NY. 

 I hope to bring the crown home as I make it my mission to spread awareness about Duchenne Muscular Dystrophy.  No matter the outcome, this journey is one of hope and victory for so many. 

 

Please follow me via social media for the latest! 

Instagram:

@jessica_fabus_cheng

 

 

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