CREATING ONE TOUGH MOTHER

BY CHRISTINE PIACENTINO I PHOTOS BY LSHOT PHOTOGRAPHY

Who knew that when I started traveling the pot-holed, boulder-filled road to advocate for a better life for my son? I would meet a pageant queen, a publisher, an author, a leadership coach, and another advocate Mom. These women helped me find my authentic voice and brand me as Rochester Woman Online’s “One Tough Mother.” I am so thankful for the support and help of my friends to make my vision for the future of “One Tough Mother” come alive. Below is a little of my story and the story of the graphic designer who created my logo.

I have advocated and fought to end Duchenne for 25 years here in Rochester and Washington, DC. My son Jonathan was diagnosed at the age of 4 with Duchenne. He is now 29. With the current medical treatments, Duchenne patients’ lifespan has increased into their 30s. Not too long ago, the prognosis was the loss of life before age 20. Duchenne muscular dystrophy is a genetic disorder characterized by progressive muscle loss. It affects many body parts, deteriorating the skeletal, heart, and lung muscles. Duchenne affects approximately 1 out of every 5,000 live male births. About 20,000 children are diagnosed with Duchenne globally each year. Currently, there is no cure.

I’ve served on the Board of Directors for Parent Project Muscular Dystrophy (PPMD). https://www.parentprojectmd. org/ PPMD certified the University of Rochester as a comprehensive Duchenne Care Clinic in February 2019. This was the first Duchenne comprehensive care clinic in New York that would use and follow the best practices of care outlined by the CDC. This was a huge win for New York State.

Jessica Fabus Cheng (Mrs. New York International) and I met during Parent Project Muscular Dystrophy’s annual advocacy conference in Washington, DC. She advocated for her cousin, of Duchenne Muscular Dystrophy; in 1997, there were no standards of care. I wanted to curl up in a ball and not deal with the world. It took me a few months of research to understand that I had to figure out the best approach to my son’s care. That’s when I found Parent Project Muscular Dystrophy. I started attending PPMD’s annual care conference. This conference is the largest, most comprehensive, international yearly conference focused entirely on Duchenne. Today it gathers nearly 500 families each year to learn the latest progress and approach to care in the fight to end Duchenne. Families also gather for support, strength, camaraderie and to hear from families on similar journeys. Based on the information I received at the conference, I was able to come back to Rochester and build Jonathan’s care team. I don’t have a medical background. Jonathan’s pediatrician told me I knew more about Duchenne than she did. I was in unfamiliar territory educating doctors and specialists on the care my son should have. and I advocated for my son Jonathan.

When Jonathan was born, I was hopeful for my son’s future. I couldn’t wait until he was independent and could talk and walk. But Duchenne had other plans for my son. Duchenne Muscular Dystrophy is a cruel disease. It slowly robbed my son’s independence; now, at 29, he relies on an aide for all his basic needs or me. Luckily, he can still feed himself.

It was a blow to receive the diagnosis

I was determined to make the lives of the families dealing with Duchenne a lot less scary, provide hope for the future, and provide the best quality of life I could for my son. There is still much work to do to extend the prognosis of this disease. Far too many Duchenne patients still pass away in their teens and early twenties. My experience navigating Duchenne also applies to helping other rare disease families. My future vision for “One Tough Mother” is to provide all families support in navigating living with a rare disease.

Through this determination, I began as a coordinator to connect other Duchenne Families in Central and Western New York. Cheryl Prior was another Duchenne mom in this group. I had a chance to talk to her about her graphic design business. She recently started her own design business and created my new logo. Stonecrest Studio https://www. stonecreststudiollc.com/

How did you come up with the name of your design company?

Both my father and great-grandfather were small business owners with business names reflecting the area where they lived. Following in their footsteps, and after sorting through various options, I named my company “Stonecrest Studio” after my neighborhood.

What made you decide to begin your own company?

Before starting Stonecrest Studio, I had a long career as an in-house Creative Lead with much flexibility in my role after 15 years. Once I decided to move on from there, I didn’t think I would be happy starting over at a new firm. I also felt confident I could succeed by providing graphic design services and delivering projects through my professional network. I require a flexible work schedule to care for my youngest son, Charlie, who is living with Duchenne Muscular Dystrophy (DMD). So, with my husband’s full support, I stepped into the opportunity to start my own business, which felt like a giant leap but also a natural next step.

If you have any advice for women entrepreneurs looking to start, what would it be?

Trust your instincts and wait until the time is right. Establishing a strong, well-connected professional network and utilizing their support to line up initial jobs to help offset your startup costs is reasonable. Be patient with yourself and keep a growth mindset. This advice was shared with me… find five people you trust and make them your unofficial board members. Include some friends who are business owners, a mentor in your field, and maybe a parent, sibling, or spouse – then check in with your board members frequently and share your business updates and gather their input with an open mind.

What’s the thing you like the most about using your Architectural Engineering and Construction (AEC) experience to help others achieve their design vision?

My AEC experience taught me how to build client trust and involve clients in the creative process. While working in the AEC space, I worked with thousands of clients on thousands of creative projects. Aside from creating and designing, my favorite part was developing client relationships and partnerships.

You designed my logo and Jessica Fabus Cheng’s logo for her compassion campaign; what was your inspiration for both of them?

Both projects were special to me because they brought awareness to DMD and accessibility. You and Jessica inspired me; I just listened to and used my creativity to make your vision come to life.

Many people I’ve met who are also dealing with a rare disease want to help others and pay it forward.

What things are you doing to pay it forward?

I serve as Western and Central New York Connect Care Coordinator for PPMD.

I recently accepted a new role: Development Director for My DMD Hero.

About My DMD Hero - They meet Duchenne families where they are, give them hope, and meet the practical needs of children with Duchenne Muscular Dystrophy. My DMD Hero helped my family fundraise for a home elevator so Charlie could safely and independently navigate our home’s three levels with ease. We are so grateful that My DMD Hero was able to offer this critical help, and now I want to help them grow and reach more Duchenne families. Here is their website https://www. mydmdhero.com/

Over the past several years I have competed in many poetry slams to which I have won awards from.

What is your background? How did you start in modeling and acting?

I never thought about acting or modeling but one day while I was doing a spoken word poetry show, I was notified about an audition. I decided to audition for the role. I did not get the role but it sparked a fire in me to pursue acting because I liked being in front of the camera. Through my acting gigs in was able to expand my career into modeling as well.

What are some of your dreams and aspirations?

My goal is to be a full-time working actor doing films and television. I would love to take on dramatic roles in films.

Where do you see yourself in 5 years?

On the big screen of course.

Who are some of the people who have inspired or mentored you over the years?

My favorite poet is Miguel Pinero and my favorite actor is Tom Hardy.

What do you feel sets you apart from others?

My passion and determination for sure. I would also say my determination to never give up and reach my goals.

What is one piece of advice you have been given that you have never forgotten?

Spend time with my family. Read and write poetry. I love to travel to New places. You can always find me in the gym in my spare time as well. What do you think is the biggest problem facing young up and coming actors and models in 2023?

The industry is over saturated with social media gimmicks that it is hard for people with no gimmicks to break into the industry.

What are three things that make you smile?

My family. Performing/ filming and I do love a good horror movie.

If you could travel to any year in a time machine, what year would you choose and why?

I would love to travel to 1966 and meet my favorite poet Miguel Pinero

If you could change one thing about yourself, what would it be?

Nothing. I am happy just the way I am

My grandmother always told me to never give up on your dreams. That has stuck with me to this day.

What is your favorite thing to do in your freetime?

What’s one of the most fun childhood memories you have?

Watching old scary horror movies with my grandmother before she passed away.