I became involved with this charity, like many people often do, after having a personal experience. My daughter was diagnosed with eye cancer shortly after being born in 2007. We were lucky in many ways and our precious child is wonderfully healthy and happy today. Still, the nightmare of those first few weeks were awful. My wife and I were terrified. Our fears were magnified by this exceedingly rare disease. I mean, cancer in your eye? I never even heard of that before. The anonymity of the disease exasperated the terror we were subjected to because there were so few people in our medical community that knew much about it or could answer the 52,000 questions we had. Somehow, in the midst of the haze of desperation and fear we were introduced to a woman who couldn't help our daughter but certainly saved us. This non medical person survived eye cancer as a child and has since dedicated herself to helping others dealing with the trauma of such a difficult circumstance. She had more knowledge than most doctors we spoke with. She was always there to speak with us. She was our angel. That woman started this charity and subsequently asked me to join the board. I was both humbled and honored. This is a great charity for many reasons. This great group of people work hard to raise funds not only to help affected children and their families cope with the devastation of this disease but they also spend so much time bringing awareness (and earlier diagnosis) to families and medical communities around the US and around the world. Many children are alive today and many more will be saved because of the dedication, commitment and hard work being done at DECF. I am extremely proud to be affiliated with such a wonderful nonprofit organization
As a survivor and a parent of a child with RB, I know too well the importance of information and support. Parents receiving a diagnosis need clear easy to understand information in order to make decisions impacting their child's life. From the physical to the emotional aspects that are associated with having cancer, losing an eye, side effects of treatment...DECF helps parents through the process always keeping the child as the first priority.
DECF assists adult survivors in staying educated about potential risks for secondary cancers, managing prosthetics and more.
This organization is making a positive impact on children with eye cancer, their families and adult survivors throughout the world. I'm proud to have the opportunity to work with and support this group.
My granddaughter is a RB survivor. Being on the board allows me to make a difference in our new world & be able to provide a better future for her when she becomes an adult. I work on her future, while my daughter takes care of today's needs. I don't step on her toes, and get to be a part in it all just the same.
I am very excited about the newly founded USA DECF Chapter. It will be a valuable resource now and even more in future years. They are taking time and care to lay out the proper foundation for the coming years. They strive to bring awareness and support to families suffering from RB. Being a grandparent of a survivor it was very difficult in the beginning to find national resources. I feel with the opening of this chapter we/I have been heard. I can't wait to see this organization grow and develop new ideas to manage the many complex issues related to this disease. Thank you and welcome USA DECF!
Our daughter was diagnosed with Bi-lateral Retinoblastoma in October of 2008. DECF has been a wonderful resource of information. While going through many treatments and running out of options, DECF was there to give us information on treatment options. This organization is a great support for our family. -MBear
I am a 32 year old survivor of bi lateral RB. I have vision in my right eye only and my left is a prosthesis. I had long been looking for a support group and also a way to become involved with RB in some capacity. Through joining DECF as a board member I have been introduced to many survivors and parents of children with RB. The survivor Facebook group has been an amazing resource because I had never been able to talk with another survivor before. We chat about our histories, concerns, problems and even have laughs sometimes. What is great is there is a wide variety of ages, locations and experiences so the information that is shared is very diverse. I am very thankful that these resources have been made possible by DECF USA.
I am the wife of an Rb survivor and the mother if a child who was diagnosed with Bi-Rb at the young age of 5 weeks old. So grateful for DECF on so many levels. The family and friends I have met through this journey has made it that much easier on me going through this with my son. I have been given what no doctor can tell me, not because of their lack of knowledge.... Lord know that is not the reason. The experiences that we encounter, the ups and downs of this emotional rollercoaster, the parents understanding us on a different level that no doctor can tell me. To hear te words from another parent saying "I get it!" makes me realize you don't and should not have to do this alone. There is support I am so very blessed to have in my life.
A mom of a child who was diagnosed with Unilateral Retinoblastoma in 2004, we are truly thankful for Daisys Eye Cancer Fund! Chalked full of information such as treatment options and practical support for families, it also offers a place to "give back". An organization that truly seeks to educate the world on Retinoblastoma and treatment options. I am thankful for such detail and care!