Colleen Crowley.
The Daisy’s Eye Cancer Fund World Retinoblastoma Citizen Award was
The Award
2007 World Rb Citizen
Colleen Crowley
2006 World Rb Citizen
Allison Wadge
Inaugural Rb Citizen
Rati Poonyane
Humanitarian activities are a core principal of Daisy’s Eye Cancer Fund. Many people around the world give their time and/or professional skills without condition, to help others with retinoblastoma. Award recipients have distinguished themselves by unusual, outstanding, unselfish contribution to the global retinoblastoma community, through extraordinary courage, time, creative ideas or skills, to improve opportunities for children with retinoblastoma.
Colleen is the mother of nine-year-old Noah. In April 2000, Noah was diagnosed with unilateral retinoblastoma after his parents noticed his eye was not tracking correctly. Upon the discovery of his cancer, Noah’s right eye was removed. Fortunately, his cancer was contained within the eye, so no additional treatment was necessary. However, over the next two years, Noah endured 6 additional surgeries to repair and replace his ocular implant. These surgeries had a tremendous impact on Noah, leaving him self conscious and uncomfortable with his prosthetic eye.
Thinking that Noah may benefit from meeting other children with prosthetic eyes, Colleen sent out a request to a global retinoblastoma on-line support group she had joined, asking if others in her home state of Arizona would like to meet for an informal get-together. In March 2001, Colleen and her 2 sons, Noah and Caleb, met with 3 other mothers and their children at a centrally located park, before moving on to lunch at McDonald’s. While the children enjoyed playing with each other in the McDonald’s play area, their Moms had the opportunity to get to know each other and talk about their journey with retinoblastoma. From this first meeting, Noah’s confidence began to grow. No longer was he the only one with a prosthetic eye. Noah now knew other kids “just like me”, and realized these children were just like any other kid he knew, so he must be ok too.
Inspired by the positive effect this meeting had on her son and the 3 other families who attended, Colleen organized subsequent gatherings. From the second get-together onwards, fathers also began to participate in these events. The group was appropriately named “Retinoblastoma of Arizona” (RBAZ.) As word spread that RBAZ was available to support families, the original group of 4 families began to grow. In 2003, Colleen founded Retinoblastoma of Arizona as a non-profit organization.
Today, RBAZ is over 25 families strong. RBAZ provides emotional and social support to families affected by retinoblastoma through gatherings held every 2 months. These functions are held alternately in Central Arizona (Phoenix) and the southern area of the state (Tucson). Colleen Crowley spearheads all of these activities. She also supports newly diagnosed retinoblastoma families by providing them with direction in where to go for information, and by putting them in touch with other RB families who have encountered like issues.
Last year, Colleen began working with Camp Sunshine in Casco, Maine, encouraging them to introduce a retinoblastoma program. The first weeklong retinoblastoma camp was held at the Sebago Lake campus in June of this year, and the organization plans to make this an annual event. As part of the Camp Sunshine program, Colleen coordinated a one-day series of talks for parents, including presentations covering retinoblastoma genetics, the effectiveness of national retinoblastoma organizations, state level groups and the global issues of retinoblastoma care. Colleen also coordinated with hotels, rental car agencies, and airlines to ensure those families in need of financial assistance could attend this event.
Families who attended represented fourteen states. At Colleen’s request, Abby White flew in from Oxford, England, to share her knowledge of retinoblastoma throughout the week. RBAZ arranged donation of her international flights. Every family who attended took home with them special and important memories. Several have begun looking at ways of linking families within their own state, just as Colleen and RBAZ has done for Arizona.
Colleen is married to ever-supportive husband, Kris Crowley, In addition to her busy life coordinating all the activities and support provided by RBAZ, she home schools her 2 boys - 9-year-old RB survivor Noah, and 7-year-old Caleb. She is a religious education teacher at her church.
On Saturday, October 6, 2007, RBAZ met at a rock climbing gym in Phoenix, followed by lunch at a local pizza restaurant. During the restaurant festivities, Dr. Amy Leverant, from Children’s Hospital in Phoenix, presented Colleen with the 2007 Daisy’s Eye Cancer Fund World Retinoblastoma Citizen Award on behalf of Daisy’s Eye Cancer Fund and SickKids Hospital.
To learn more about Retinoblastoma of Arizona (RBAZ), please visit their website:
Retinoblastoma Citizen Awared.
2007: Colleen Crowley.
2006: Allison Wadge.
Inaugural Recipient: Gorata Poonyane.
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