RBAZ isn't just an organization, we are a family.
In April 2000, at 2 years old, Colleen’s son, 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 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 RB children 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 several times a year. These functions are held in Central Arizona (Phoenix) and the southern area of the state (Tucson). Colleen Crowley spearheaded all of these activities. She also supported 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.
In 2006, 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 2007, 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. Abby White from Daisy’s Eye Cancer Fund, flew in from Oxford, England, to share her knowledge of retinoblastoma throughout the week. RBAZ arranged donation of her international flight. 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.
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 Phoenix Children’s Hospital, 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.
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 and is a religious education teacher at her church.
Colleen and her family moved to Ohio in the summer of 2009. Profile written by Abby White with Daisy Eye Cancer Fund .