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.
What a blessing it is that DECF has been brought to the United States. My son was diagnosed with sporadic unilateral retinoblastoma in 2004. We were absolutely blindsided and were desperate to find other families going through the same thing. Unfortunately, we went through the beginning of our Rb journey alone. I recently became aware of DECF in the USA and immediately joined the Facebook groups. It is wonderful to see the support available to people starting their Rb journeys as well as families like us who are well into them. I have recently volunteered to serve on the Board of DECF USA as Treasurer. I am dedicated to furthering the good this wonderful organization has already started and I truly believe we can accomplish great things.
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!!
I'm a volunteer for DECF USA and also a parent of a RB survivor. DECF USA is new and working hard to grow its resources to raise awareness and assist in the fight against this rare childhood cancer. It is lean and productive. You can count on the dedicated volunteers at DECF USA to use your donation wisely. Everyone is passionate and dedicated. I hope that after reviewing this group's information and reading these reviews, that you will help in making DECF USA grow stronger. Thank you!