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 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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Role: Professional with expertise in this field
Rating: 5 stars  

As a research professional who studies the biology of retinoblastoma, I am very pleased to see the positive impact of Daisy's Eye Cancer Fund (DECF). It is so important to have a support network with those who understand the difficult times. I keep in touch with DECF through a Facebook group. The DECF group is so warm and welcoming. Time and again, I see family members reach out with questions and concerns about tests and diagnoses, and then be comforted by others who have navigated successfully through the same challenges. The volunteers of DECF have a wealth of information and a special understanding that comes with first-hand knowledge. DECF continues to inspire me in my research and I wish them continued success in all of their endeavors.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

I am so happy to know that there is a organization such as Daisys Eye Cancer Fund. They were so helpful and quick in getting information to me regarding my son. I look forward to being a part of this group and am thankful to know that there is a supportive group such as this that can offer resources and guidance to parents and families of children with retinoblastoma.

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  

I am so happy to have the opportunity to volunteer with DECF. When my son was diagnosed, I wanted to connect with other families going through this journey and to learn as must as I could about Retinoblastoma but it was difficult to establish connections outside of the hospital. DECF is making it possible for families to connect all over the world and is an incredible source of current information about Retinoblastoma. Thank you DECF!!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

I am so thankful for the outreach DECF is doing on a global basis. For myself, I am thankful for having a place I can turn to when I need help finding answers. Their website is a wealth of information. My rb daughter is 14 years old and doing well. She is at an age where she wants to understand rb more in-depth, There are times when I don't know an answer or don't know how to put the answer into words she will understand. The DECF website provides an excellent source for us. I am honored to be a part of such a fantastic organization.

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  

I am so greatfull for Daisys Eye Cancer Fund! They have been very helpfull to my great neice Evangeline Collette Johnson during this trying time.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

I am honored to support the work that DECF does. The tireless and tenacious drive towards Global Awareness is awe inspiring. I strongly believe that DECF can (and will) make a significant and enduring difference to the way the World views RB and will be central to ensuring that we save life and sight for every child.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

Daisy's Eye Cancer Fund has helped me to understand and respond to Chariabella's Bi-Retinoblastoma condition in a holistic way. The information provided in the DECF website is enriched with information, caring and love. It has also lead me to an empowerment beyond my child's medical condition that she can still accomplish bigger goals in life as much as other children are capable of overcoming their obstacles at a very young age. HOPE and HEALING are such amazing words that DECF has given my family. I am privileged to have known DECF through USA Chapter although I am from Philippines and is happy to have been directly communicating to Abby White.

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  

Decf USA is a great resource for families going through this difficult time with childhood cancer. I myself have received info on different topics and look forward to learning more through the resources they have available!

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

A lot

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  

DECF has helped our family locate a new doctor when our doctor moved away! THanks 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

Was this review helpful?