Who we are
This foundation has been established to assist the Coppola family, in raising funds for research, finding a cure, and the opportunity to educate the public about this rare progressive neurological disease. This disease is often described as being degenerative, debilitating, and one that robs not only the afflicted of a prosperous future, but all those who interact with them.
The Coppola family is committed to giving thanks and praise for all our blessings. This foundation will allow individuals an opportunity to give back to their community not only in a financial manner but the opportunity to experience the intangible blessing of being part of a family/community that embraces both trials and triumphs.
In addition to raising funds for a cure and educating the public this foundation shall make a positive impact on our family despite the gravity of a NPC diagnosis. This foundation will give purpose to remain positive in our outlook despite the fact Andrew and other children are afflicted with a disease that to date has no cure.
To know Andrew is to love him….to appreciate his innocence, kindness, his unique mannerisms, and laid back approach. Spend an afternoon with him and you will not only laugh at his sense of humor and marvel at his clumsiness, but you will be amazed by his kind and generous spirit. He is an example of how one can live their life being non-judgmental, caring, and kind. We invite anyone to participate, celebrate and strive towards finding a cure that impacts those suffering from Niemann Pick Type C, with the daily challenges and decline in functions, such as walking, talking, and swallowing.
A Mother’s Perspective
As Andrew’s mother, I am confident that Andrew has and always will be a blessing to everyone he encounters. As I look back over the years and stages of his growth and development, a few qualities continue to be prevalent. Andrew is gentle, kind, and has an innocence about him. He is often curious about knowing everyone’s name. If you have the opportunity to make eye contact with Andrew he will likely ask you “What is your name?” After you respond he may say “No… What is your real name?” Many times strangers are perplexed on how to respond. Often they repeat their name and Andrew will finally respond with “and I am Andrew.” He is not afraid to shake your hand and if you’re a female he may even ask for a hug.
Despite Andrew’s curiosity and interest to converse with as many people around him, he has been designed that on the next encounter he will either forget your name or call you by another name. As his mom it brings me great joy when individuals who recognize Andrew come up to him and start a conversation.
In May 2012, we were confronted with the same diagnosis of our younger son, David. Unbelievable, because we always felt David would escape this condition. He was always so strong, athletic, inquisitive and the protector of his older brother. As the physical changes occurred, we had to face the reality that David was having difficulty walking, declining academically and suffering uncontrollable upper body tremors.
Our ultimate goal is to bring awareness to this disease and encourage parents, teachers and clinicians to consider this rare diagnosis if they encounter someone with similar symptoms that persist without any explanation.
Future research and the advent of new medications are our only hope for a cure. Currently, the boys are on experimental drugs. Supportive care is ongoing to manage their physical decline – walking, talking, swallowing and coordination.
To learn more about Nieman-Pick Disease Type C, visit nnpdf.org.
HELP US RAISE AWARENESS AND FIND A CURE