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.
This charity has a global impact on improving the chances of sight and life for children affected by retinoblastoma.
They work hard and continually strive to raise funds and awareness.
They have come along huge leaps since their beginnings and now help families all over the world.
I personally know people who's support from DECF was the only thing that got them through when their child was diagnosed with retinoblastoma. Their outreach is a vital support network for families who have been thrown into the scary world of childhood cancer.
Awareness is vital in the fight to save vision and lives and without DECF, in many countries across the world, more children would lose their sight to retinoblastoma and possibly life too.
Such a wonderful organization! There is not enough awareness about retinoblastoma. Knowing Daisy is out there helping as many children that they can is amazing. Getting early detection information out to new parents is one of their goals that I am 100% in support of! If only we would have known about this dreadful cancer early, maybe our little granddaughter's eye could have been saved! Kudos to DECF for all you do!
DECF is great! They provide great information to parents and other family members going through very difficult times with the diagnosis of their little loved one with retinoblastoma. They offer hope and encouragement to everyone.
A very dear friends granddaughter has RB and is surviving. The challenges that are faced by the family are beyond human endurance. The DECF is a great help to them. Without it the hopes for Evie would be greatly reduced.
The information available by DECF is great. My hubby is a bi-rb survivor and we also have a daughter diagnosed with bi-rb as well. Of all the sites available for information on RB I have found that DECF is the easiest to read and understand but goes further to help familes and not just the medical info one is looking for. The people involved with DECF are amazing as well. They try to answer any questions you have and put you in touch with others in the same situations. The best shoulder to have to cry on so to speak when RB is the cause.
Daisy's Eye Cancer Fund was there for my family when we needed them. They provided resources and accurate information that helped us make the right decision for our daughter. They continue to amaze me with their effort to create positive change for Rb affected children and adults. I sincerely wish I could have joined their One Retinoblastoma World conference in London in October 2012. I am hopeful to join them in the future. Thank you, Daisy's Eye Cancer Fund, for making a difference and reducing the disparity in Rb affected families.