Daisys Eye Cancer Fund

Rating: 5 stars   36 reviews

Issues: Cancer

Location: 5640 Telegraph Road, Suite 306 Saint Louis MO 63129 USA

Mission: Increasing access to specialist care will bring the promise of life and sight to every child. This is the mission of Daisy's Eye Cancer Fund. We: • Educate about retinoblastoma to achieve early diagnosis and rapid referral to specialist care; • Empower medical teams to deliver sustainable high quality evidence-based care • Enable family support programs that reduce burdens and improve access to essential care
Results: • Awareness: we have hosted several successful awareness campaigns in collaboration with global awareness events in May and September. • Family Support: we have built an incredible social network among affected families and survivors within and between Rb treatment centers, providing social support, advocacy and key information to improve treatment outcome and quality of life of affected children and families. • One Rb World: in October 2012, we hosted the first global medical working meeting, discussing major challenges to effective care and potential solutions. 30 countries were represented (half of them developing nations). New partnerships have been formed and collaborative activities proposed that we will move forward over the next few years to improve awareness, clinical care and family support worldwide.
Target demographics: Children with eye cancer (retinoblastoma), their families and adult survivors.
Geographic areas served: National and international (primarily the developing world)
Programs: Retinoblastoma Family Groups: we aim to develop single-state and regional family groups across the USA, so that within five years, every family will have access to face-to-face support close to home. Each family group will provide a program of social activities, information for families, a small grants fund for families in need, and local advocacy. National Retinoblastoma Strategy: we aim to develop a national collaborative multi-center approach to retinoblastoma care, encompassing awareness campaigns, evidence based medical care and family support initiatives to improve care for all affected children, adult survivors and their families in America. Rati’s Challenge: In September 2006, Daisy’s Eye Cancer Fund launched Rati's Challenge to address the needs of families affected by retinoblastoma in Africa. The Kenya National Retinoblastoma Strategy was launched through this program in September 2008, to build a model for capacity building and sustainable care of children in developing countries. One Rb World: We aim to promote international collaboration to advance high quality retinoblastoma research and delivery of effective care to all children around the world. Annual One Rb World working meetings inspire medical professionals and parent / survivor advocates to become engaged in collaborative work, and advance international sustainable projects that have capacity to rapidly improve awareness, clinical care and family support. We work in full collaboration with DECF Chapters, prospering from shared experience and energy to keep our children at the heart of all we do.
2013 Top-Rated Nonprofit
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EIN 45-4886827
314-669-1104
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Community Reviews

Rating: 5 stars  

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

If I had to make changes to this organization, I would...

I can not think of any changes I would make. I only wish we could raise more money more quickly to help more families

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

want more funds enabling the organization to afford full time dedicated employees to implementing the vision.

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

Continue to focus on the real need, building a better tomorrow for families and survivors. Stay the current course to build our foundation strong.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

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!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

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

Will you volunteer or donate to this organization beyond what is required of board members?

Likely

How much of an impact do you think this organization has?

A lot

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

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!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?