Ciao, my name is Serge DiSilvestro
Serge DiSilvestro is an Italian-born American citizen who immigrated to the United States with his family in 1960. Despite facing physical and mental challenges due to his diagnosis of VCP disease/IBMPFD, Serge is dedicated to finding a cure for the disease. Along with his family, he has partnered with the Cure VCP disease organization to raise awareness about the disease and fund research towards finding a cure. Read his unique and inspiring story below.
Ciao, my name is Serge DiSilvestro,
It's a pleasure to make your acquaintance. I was born in Italy and became an American citizen as a teenager. My family and I immigrated to the United States in 1960. My parents divorced three years later, and my mother and I returned to Europe. Red, white, and blue ran deep in my veins, and I was grateful to return to America in 1969. I couldn't wait to join the US Army, and when I turned 18, I became an American Soldier.
My father told me there were two ways to make it in life: study and use your brain or work hard and use your back. Because of my language barrier, option two was my only choice.
I became self-employed at the age of 26, owning two fast-food restaurants. At the age of 39, I opened my current business, Park N' Jet, an O'Hare Airport parking lot. I worked on my feet for 80 to 90 hours a week for 35 years.
At age 50, I bought my first waterfront home in Florida, and my wife and I started traveling the world. We wanted to enjoy the fruits of our hard labor. Between the ages of 50 and 60, life was great! I couldn't have asked for anything more.
I had a great family and a successful business. I felt like I was the luckiest person in the world and looking forward to living a long, happy, and healthy life like my father.
It all came to a screeching halt when I was diagnosed with VCP disease/IBMPFD.
I was a tough kid raised by a divorced mom. I made risky business decisions and worked countless long hours. It all seemed difficult at the time, but looking back on it now, it was all very easy compared to what I'm currently challenged with.
To walk short distances, I must use a walker or crutches. I also have to use a wheelchair for places that involve lots of walking. I'm at a point where I can't enjoy playing with my four grandkids due to my physical limitations. It is heartbreaking.
Life has changed so drastically physically, but it's even more challenging mentally.
As my disease progresses, the most difficult challenge for me is to keep myself mentally busy. I dread progressing like my brother, who also has VCP disease. He isn't able to walk or get up from a chair without help. I don't know if I will be able to handle that.
Support Serge's fight and our journey to find a cure by making a donation today.
Every donation moves us closer to finding a cure for VCP disease.
My only wish is that none of my kids or other family members gets this dreadful disease… which is why I tell my story.
I am a self-made immigrant who has worked hard my whole life. I am a proud American living the American dream.
We are fortunate to live in the world's greatest nation, where we have access to the best health care. Yet, there are no treatments or cures for VCP diseases. How is that possible?
My family and I have partnered with the Cure VCP disease organization to help bring awareness to the medical community about our rare disease. We must take control of our disease to drive research toward treatments and a cure.
If you're a patient, I urge you to share your story, host a fundraiser, and participate in patient studies that will provide data needed for drug discovery and a cure. Provide Link(s) for Patients.
I also ask that you make a meaningful contribution to eradicating this disease.
In Italian, we say, "Ai Mali Estremi, Estremi Rimedi" - "Desperate Times Call For Drastic Measures ."Translated, it means "to extreme wrongs, extreme cures"... The phrase is often used when talking about serious and extreme situations.
Dear friends, VCP disease is serious! It robs you of your ability to use your muscles. It impacts your bones and causes unbelievable pain that hurts you so deeply it's hard to describe, and it steals your memory and mind. It is serious, and we must take serious action!
VCP diseases are extremely wrong, and we need an extreme cure for such a time as this.
Give TODAY! Help us find a cure!
Grazie — with appreciation and hope,
Son, Brother, Husband, Father, Grandfather, Entrepreneur, Proud US Veteran, and VCP Patient
Cure VCP Disease, Inc. is a patient advocacy organization driving efforts to discover a cure for neurodegenerative diseases associated with VCP, including IBMPFD, dementia, Parkinson's, CMT, and ALS. We encourage patients and doctors to connect with us. We are committed to collaborating on research and advocacy initiatives and helping patients and their families.