Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever has.                                                        - Margaret Mead

Working on behalf of children and families from all over the world who are dealing with the effects of retinoblastoma, Christina Ashford gave her time and talent serving as the president of the board of Retinoblastoma International for five years.  I begin this newsletter with a collective and heartfelt thank you for her amazing skill and dedicated leadership.  Thank you Christina for being a beautiful woman with a vision of a world in which retinoblastoma no longer destroys the sight or takes the life of any child.  Christina remains an active member of the board and manages our website.

As the new president of RBI, I draw inspiration from the board’s mission and my family.  I am a parent of a child with bilateral retinoblastoma.  He will be twenty six years old this month.  Many years have passed since we spent our lives traveling to and from the hospital, but I only have to spend a moment reflecting on the journey for my eyes to well with tears and my heart to tug.  Today he is a graduate student full of laughter, sage advice, and a smile that draws the world to him. 

Thank you,
Sue Dumm
RBI Board President

EVENTS

World Wide Retinoblastoma Awareness Week 2009
May 10 – May 17

Organizations and families from all parts of the globe will take pause, make donations, and host events to spread the word about Retinoblastoma.  Volunteers in California have organized fundraising and educational events through out the state.  Our board member and beloved former cast member Mathew Ashford helped raise funds for Retinoblastoma International at a Days Of Our Lives soap opera event in Hartford, CT.  Please check the website for updates on other festivals and events that will benefit RBI and spread awareness about retinoblastoma.

Eat Pizza and make money for RBI

If there is a California Pizza Kitchen in your neighborhood, please contact them to schedule a fundraising event.  CPK will work with you to organize a designated day.  Retinoblastoma International receives 20% of the revenue brought in by diners who present a flyer distributed by you in your community.  The process for setting up the event is easy.  You and your community can enjoy a fun meal out while making money for RBI!  Let’s work together on making this happen through out the nation.  Please contact me at info@retinoblastoma.net for more information.

Funds raised from two Comedy Show Events and individual donations enabled RBI to continue funding a part time genetic counselor and move forward on several long range projects.  Below I noted a few examples... 

EARLY DECTION AND TREATMENT PROGRAM

Advances in treatment and early detection have shown that it is possible to save vision and lives. Detection of retinoblastoma requires a primary care doctor to look into a child’s eye in a darkened room.  A room with lights off and blinds closed.  The pupils must be dilated for the exam to be effective.  Shutting off the lights and closing the blinds requires no extra money and only a minute of time.  Why then do parents continue to say they had their baby’s eye examined and were told there was nothing wrong?  Because the pupil MUST be dilated to see the tumor.  Our number one project for the next year will be to finalize our outreach materials designed to educate parents and primary care physicians about how to give an effective eye exam. We also commit to distributing information about red-reflex screening.  We welcome your support in taking these essential steps toward early diagnosis.  We know this will save children’s lives. 

Through a generous multi-year donation from a family of a child with retinoblastoma, Retinoblastoma International has collaborated with the Saban Research Institute at Children’s Hospital of Los Angeles to create and equip A Proteomics Core Facility.  Retinoblastoma will be the first childhood tumor studied in the landmark program.  Many more children die from a retinoblastoma associated malignancy than die from retinoblastoma.  For this reason there is a tremendous need to produce screening tests for various types of cancer.  Survival is directly related to early diagnosis.  Please learn more about this wonderful program by visiting the “What We Are Doing?” section on our website, http://www.retinoblastoma.net .

GLOBAL OUTREACH

This month Dr. Linn Murphree consulted with Dr. Marco Ramirez-Ortiz on a case using the RETCAM.  Funds raised by RBI to help purchase the RETCAM and train Dr. Ramirez-Ortiz built a relationship that continues to flourish.  Our website is visited by people seeking information from all over the world.  Collaboration with organizations that focus on retinoblastoma is a part of our mission.  Please contact us if you have an idea.  Working together makes sense.

On behalf of Retinoblastoma International I invite you to get involved.  We welcome you as a volunteer.  We welcome your ideas, stories, and of course your donations.  RBI wants to work with you at a grass roots level, a national level and an international level.  Please contact me at info@retinoblastoma.net for more information or to make a contribution. 

Many people have written in wondering how they can best support RBI. Of course we very much need your assistance and valuable input. We have many opportunities for you to help further our mission at RBI. Please help us to get a better idea of how we can work together to further our mission.

If you have any comments on this newsletter, please contact us at info@retinoblastoma.net

Retinoblastoma Newsletter
Spring 2009