We will be participating in the 2024 Take a Walk in Our Genes. All funds raised will support the needs of the patients and families of the Genetics Services Department at the Hackensack Meridian Health Joseph M. Sanzari Children’s Hospital.

Our Pasquale is a superhero and a patient of the Genetics Services Department at Hackensack Children's Hospital. He has Russell-Silver Syndrome, a rare form of dwarfism that, for him, has come with digestion and feeding challenges, severe scoliosis, autism, failure to thrive, and mental development challenges. He has a feeding tube, scoliosis cast (soon will be a brace), and leg braces. He sees doctors regularly, gets treatments regularly - and it all costs a tremendous amount of money. To start, insurance premiums continue to skyrocket. When you have a disabled child, every month you get surprise bills in the mail - and they're usually huge. Every time you get down to owing $0, the next day, you get a bill for close to $1,000. I think it's the law of physics or something - LOL! Yes, there are often government programs to which one can turn. But they make it a humiliating and difficult experience to get through. It feels like you need a degree in rocket science to understand it. Often, you feel despair because the bills keep coming and you start to wonder if others are making a fortune over the misfortune of your life. I have a loving extended family that supports us every step of the way, but not everyone does.

That's why we're gathering Pasquale's People for this walk on June 9. Hackensack Hospital wants to be a lifeline for families in need of genetics services who cannot afford it. If I can do anything to help other families like mine get over that sense of dread about money, so they can focus on their loved one's care, we're going to do it. Also, Hackensack Hospital determined my son had Russell Silver Syndrome, helped us get in touch with all the right specialists, and they continue to do all they can to ensure he has the best quality of life possible. Our Pasquale finds a reason to smile every single day, and it's contagious. He brings us joy and love and Hackensack Hospital enables our happiness and his health.

I also decided to support this amazing cause because the Genetics Service department is a leader in clinical genetics in the metropolitan area and has been in existence for more than 30 years, offering genetic services and testing for both children and adults. All patients are seen by board-certified medical geneticists and/or genetic counselors in the areas of preconception/prenatal, cancer, pediatric, and adult genetics. Patients are evaluated for risk assessment, testing, and management, as well as supportive counseling. Our goal is to improve the lives of our patients by providing them with the important information they need to make the best possible decisions.

Please consider supporting my effort with a meaningful amount – $25, $50, $100 or any amount – will make a significant difference! Honestly, any contribution will help. 

Thank you for your generosity and support. Together we can make a difference for these patients and their families!