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Daisys Eye Cancer Fund

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Nonprofit Overview

Causes: Cancer

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.

Community Stories

36 Stories from Volunteers, Donors & Supporters

Kristen30

Client Served

Rating: 5

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!

Eric54

Client Served

Rating: 5

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.

Board Member

Rating: 5

I became involved with this charity, like many people often do, after having a personal experience. My daughter was diagnosed with eye cancer shortly after being born in 2007. We were lucky in many ways and our precious child is wonderfully healthy and happy today. Still, the nightmare of those first few weeks were awful. My wife and I were terrified. Our fears were magnified by this exceedingly rare disease. I mean, cancer in your eye? I never even heard of that before. The anonymity of the disease exasperated the terror we were subjected to because there were so few people in our medical community that knew much about it or could answer the 52,000 questions we had. Somehow, in the midst of the haze of desperation and fear we were introduced to a woman who couldn't help our daughter but certainly saved us. This non medical person survived eye cancer as a child and has since dedicated herself to helping others dealing with the trauma of such a difficult circumstance. She had more knowledge than most doctors we spoke with. She was always there to speak with us. She was our angel. That woman started this charity and subsequently asked me to join the board. I was both humbled and honored. This is a great charity for many reasons. This great group of people work hard to raise funds not only to help affected children and their families cope with the devastation of this disease but they also spend so much time bringing awareness (and earlier diagnosis) to families and medical communities around the US and around the world. Many children are alive today and many more will be saved because of the dedication, commitment and hard work being done at DECF. I am extremely proud to be affiliated with such a wonderful nonprofit organization

General Member of the Public

Rating: 5

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.

Derek M.

General Member of the Public

Rating: 5

This is a great cause which helps children get the medical treatment they so badly need. I know a family which benefits greatly from the organization.

Board Member

Rating: 5

As a survivor and a parent of a child with RB, I know too well the importance of information and support. Parents receiving a diagnosis need clear easy to understand information in order to make decisions impacting their child's life. From the physical to the emotional aspects that are associated with having cancer, losing an eye, side effects of treatment...DECF helps parents through the process always keeping the child as the first priority.
DECF assists adult survivors in staying educated about potential risks for secondary cancers, managing prosthetics and more.
This organization is making a positive impact on children with eye cancer, their families and adult survivors throughout the world. I'm proud to have the opportunity to work with and support this group.

Professional with expertise in this field

Rating: 5

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.

Karen115

General Member of the Public

Rating: 5

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!

Previous Stories

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

Winnie B.

General Member of the Public

Rating: 5

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.

Teri D.

Board Member

Rating: 5

My granddaughter is a RB survivor. Being on the board allows me to make a difference in our new world & be able to provide a better future for her when she becomes an adult. I work on her future, while my daughter takes care of today's needs. I don't step on her toes, and get to be a part in it all just the same.

Previous Stories

Client Served

Rating: 5

I am very excited about the newly founded USA DECF Chapter. It will be a valuable resource now and even more in future years. They are taking time and care to lay out the proper foundation for the coming years. They strive to bring awareness and support to families suffering from RB. Being a grandparent of a survivor it was very difficult in the beginning to find national resources. I feel with the opening of this chapter we/I have been heard. I can't wait to see this organization grow and develop new ideas to manage the many complex issues related to this disease. Thank you and welcome USA DECF!

Ricki H.

General Member of the Public

Rating: 5

DECF is a wonderful organization that is helping so many families and patients as they fight their battles with eye cancer.

katia

Volunteer

Rating: 5

DECF is a great organization filled with extremely passionate people who care about children with Retinoblastoma and their family. It is also a great resource to our retinoblastoma community.

Board Member

Rating: 5

Our daughter was diagnosed with Bi-lateral Retinoblastoma in October of 2008. DECF has been a wonderful resource of information. While going through many treatments and running out of options, DECF was there to give us information on treatment options. This organization is a great support for our family. -MBear

Client Served

Rating: 5

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

Janice17

General Member of the Public

Rating: 5

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.

KarenGregg

Volunteer

Rating: 5

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.

Chitown RB mom

Client Served

Rating: 5

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!

Client Served

Rating: 5

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!!!

Marissa G.

Board Member

Rating: 5

I am a 32 year old survivor of bi lateral RB. I have vision in my right eye only and my left is a prosthesis. I had long been looking for a support group and also a way to become involved with RB in some capacity. Through joining DECF as a board member I have been introduced to many survivors and parents of children with RB. The survivor Facebook group has been an amazing resource because I had never been able to talk with another survivor before. We chat about our histories, concerns, problems and even have laughs sometimes. What is great is there is a wide variety of ages, locations and experiences so the information that is shared is very diverse. I am very thankful that these resources have been made possible by DECF USA.