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  

My daughter has bilateral retinoblastoma and this organization is wonderful!!! When she was first diagnosed they made an awful situation that much better:) thank you!

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

Do nothing:)

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?

2013

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Rating: 5 stars  

This organization has been a tremendous help for my family in the months and year following my daughters diagnosis. I'm so great full for all the support and information this organization has lent to my family.

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?

2013

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Rating: 5 stars  

WOW! Can't say enough about this non-profit! They have helped my family through an RB diagnosis, constant questions and have often eased my own fears when my daughter was diagnosed 7 years ago (she was 8 months old). We have made many donations to this amazing group and we are looking forward to many more years working w/DECF.

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

I just always wanted them to be in the US along with their beginnings in the UK and it seems that is where they are headed!!! YEA!

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  

My son life survived from the great support of DECF,Bisrat (8)diagnosed in 2004,he is survivor od Retinobalstoma, Child eye cancer, He lost one eye but now he is now in good health. I have no word to thank them, even then i suggest to others and the got great support. Samson Fither of Bisrat. from Ethiopia

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  

As a mother of a child with retinoblastoma, I am always interested in learning about treatment options and meeting other families affected by rb. DECF does a wonderful job locally and globally to ensure children and their families get the information and support they need. The volunteers work tirelessly to help families. Thank you for the work that you do!

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  

It is so hard to find support locally for Rb. DECF allows you to connect with people going through what you are nationally. It is so wonderful! Thank you!!!

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 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 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  

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

Was this review helpful?