Shannon Reedy of Chase the Cure takes so much time to assist other families dealing with NPC while still caring for her own son suffering from this awful disease. She has helped our family immeasurably since our son's diagnosis and is someone I would credit with complete honesty and genuineness. She is after a cure and willing to help anyone she can in that endeavor.
Having a Child diagnosed with any rare disease is bad enough. The constant worry, time and effort that goes into raising such as child is monumental. It is a constant struggle with the unknown
When a parent find out that their kid/s has NPC, it is like the whole world stops. There are so many things that goes through their mind and so questions to ask. What they need at that moment is compassion and understanding; someone who is willing to listen, explain and help; and help in a big way.
To say that Chase the Cure and specifically and Shannon Reedy go out of their way to help others inflicted with this terrible disease is an understatement. Many parents with kids with NPC will eventually find Shannon and I can guarantee you that she will do everything she can at any hour of the day to help the parents and their kids. She did mine.
A primary goal of Chase The Cure, Inc. is to fund promising new research in the hope it will benefit the current generation of Niemann Pick patients. Through this organization, Shannon openly shares the journey of her son, Chase, while providing a valuable resource for members of the Niemann Pick community. Chase The Cure connects families to researchers, physicians and others touched by the disease, helping them share ideas, experiences and the latest advances. The medical information available through the organization includes scientific literature as well as easy to understand descriptions of Niemann Pick Type C and its treatment. Chase The Cure helps raise awareness of this rare disease and offers hope to those who are fighting it.
As a mother of a child afflicted with NPC, I can attest to the fact that Chase The Cure, truly cares about our children. Shannon Reedy personally makes phone calls, does research and offers advice, connects parents with researchers and medical doctors. She goes beyond the call of duty to ensure our children's needs are met.
This non profit is paving the way for future treatments and/or possibly finding a cure for this rare disease. The research, testing and treatment is extremely expensive. Any support you can offer makes a difference.