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.
Professional with expertise in this field
Daisy's Eye Cancer Fund had helped my patients and their families in immeasurable ways. The story behind how this organization was invisioned and how it began is heart warming and commendable. The outreach of this program is immense and it's mission statement is lived out each and every day by its committed and incredibly dedicated members. They continue to do great work both here and abroad.
Amy Leverant M.D.
Professional with expertise in this field
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.