The Joey Bergsma Retinoblastoma Awareness Foundation is dedicated to increasing awareness of simple, even free, methods for preventing needless blindness and death in children. The foundation was established in memory of Joey Bergsma who died December 22, 2000 at the age of three from metatastic retinoblastoma. CBS Chicago news recently featured the foundation in a report available online here.

A message from Joey's grandmother.

"My beloved grandson, Joseph Hollander Bergsma, died needlessly from metastatic retinoblastoma on December 22, 2000. Joey was three years old. Awareness would have saved his life.

I was taking pictures of the tumor reflecting the light and did not know it.

These pictures would have saved his vision and his life.

More importantly, if an ophthalmoscope would have been used in a darkened room to screen his eyes at his 15 month or 18 month well-baby exam…Joey would be alive. Joey's journey was short, but his message is powerful. The last year of his life was a miracle. We were at Sloan Kettering in Manhattan for 8 months and the Burzynski Clinic in Houston for over 2 months. The last ten days of his life we were at home in Florida. Joey died in his house where he wanted to be. Everyday was a gift and I thought he was to be the first child to survive this disease. Through his death I realized the miracle was; Joey is to be the last child to die needlessly from it."

Clues To Be Aware of Between Well-Baby Exams

1. Check all of your photos. Especially red eye photos. If you have a white reflection where there should be a red reflection, you may have photographed an eye disease, including retinoblastoma tumors. A picture like this could save your child's vision or life. Be aware! Very dark pupils do not reflect red in photos, but the eye disease will still reflect white.

2. Check for strabismus...irregular eye movement.

• Does the eye roll in or out?
• Does the eyelid appear to be drooping (lazy eye)?
• Is there any odd movement?
• 20% of the children who have an eye disease will have strabismus.

3. Check the eyes for abnormal symptoms

• Is the eye red, itchy, irritated and/or sensitive to light?
• 10% of the children who have tumors, cataracts, Coats disease, etc... will have these symptoms.