Hello everyone,

It seems hardly possible that it could already be November, but here we are almost to the end of 2007.  We at Retinoblastoma International, continue to challenge the face of this disease on many fronts.  In this season of thanks, I want to thank each of you for your letters and support to our small, but mighty organization. 

I also want to update you on all the good works that have been happening and then ask you to make a financial contribution to help us continue this much needed effort.  Any monetary donation is valuable and of course 100% tax deductible.  Your donations are essential to continue to move forward.  They can be made via Pay Pal online by visiting www.retinoblastoma.net or please put a check in the mail made out to RBI.  The mailing address is:
Retinoblastoma International
c/0 Childrens Hospital Los Angeles
4650 Sunset Blvd.  MS#88
Los Angeles, CA 90027

I am also including in this newsletter a recent letter I received from a 50 year old Rb survivor that I think is full of hope.  Again, thanks very much in advance and I hope you will feel as excited by our progress as we do.  Happy Holidays!

Christina Saffran Ashford
RBI Board President

PROTEOMICS

Proteomics as a method of care in pediatric cancer patients is cutting edge. The coordination with USC for using the latest machine technology for Proteomics research is progressing well.  A grant for $720,000 was received and a search for a director is under way.  The Pathology department is considering using funds from their budget to cover this expense.
Identification of proteins or bio- markers for osteosarcoma will enable physicians to predict the possible occurrence of this secondary cancer in patients with bilateral Rb.

This will have enormous impact on the lives of those children and their families, as well as children with unilateral Rb that have tested positive for the gene.   We hope to begin using the technology by the end of the year.  Numerous requests for more information about the project have already been received.

GENETICS

This year, RBI began funding a geneticist on the premises of Childrens Hospital Los Angeles, who works in conjunction with Dr. Murphree.  Because of the geneticist’s presence, 80% of patients with unilateral Rb have participated in testing.  Of these, 17% have been found to carry the Rb gene.  Providing this information has decreased the number of children needing to undergo eye exams under anesthesia on a weekly basis, by half.   Moreover, this service is available without billing Medical or the patient.  The funding for the genetic counselor has been crucial to the success of this program. The positive impact on infants and their families has been immense.

INTERNATIONAL EFFORTS

People from all over the world are viewing the website.  At their request, RBI recently sent new Early Detection brochures and PSA materials to physicians and parents in China, India and Vietnam, Germany, Canada, Brazil and Mexico.  This will aid in their own country’s awareness, early diagnosis and treatment.
  
The website has also become a place for Dr. Murphree to connect with physicians who have questions about diagnosis and treatment.  More and more he is consulting with colleagues via the Clarity web-cam, using digital images sent over the internet.
 
We are also working to obtain the name of a doctor/doctors in each country that specialize in diagnosis and treatment of Rb to post on the website.  More international help is needed.  

EARLY DIAGNOSIS-NEONATAL

RBI continues support of a new program to coordinate services and examine in-utero babies who are at high risk for developing Rb.  Using high resolution ultrasound and fetal MRI testing every 4 weeks, we are able to see the existence/progression of the Rb tumors.  If there are tumors present, the babies are delivered at 36 weeks and treated early, due to the rapid growth of the tumor during the last 4 weeks of gestation.  This is a very new program and mothers of at risk children have located it via the website.  At present, there are just a handful of infants who have begun this process. This will save vision and lives.

Here is the letter from a wonderful Rb survivor that I promised. 

My name is Mary Beth Cannon.  I spent some time today just looking over your website.  I was diagnosed with retinoblastoma in 1957 in North Carolina at the age of 2 years.  Looking over your web site was both a heart warming and a sad experience.  I guess we all hate to relive some of what we've been through and we hate to see that others have suffered also.  But it's a warm feeling to know you're not alone too.  Here's my story for you:

"I was born in February 1955 in Kinston, North Carolina, the only little girl baby surrounded by brothers.  I do not remember being diagnosed with retinoblastoma.  I don’t remember the surgery or the follow-up.  I do remember my mother’s tears and sadness.  

I was diagnosed just after I turned two years old.  My mother had suspected there was something wrong with my left eye . . . every now and then as the light would hit it, it just didn’t look right.  But when she’d pick me up and hold my face to hers, looking deep in my eyes, she just didn’t see anything wrong.  Then one day down the hallway I’d turned toward her and looking into my eyes she saw a reflection of the light and she knew something was wrong.  Rushing me to the eye doctor right away, the doctor examined my eyes, thinking this was yet another visit from this overly concerned, over protective mother.  Suddenly the doctor grew quieter, looked deeper and then turned to my mother and asked her to call her husband at work and have him meet her there at the doctor’s office.  I was quickly referred to Duke University Hospital.  The day after my first appointment with the doctors’ there, I was operated on to remove my left eye.  Pathology Reports indicated that there had been no progression of the disease outside of the eye. 

I don’t know that I remember ever seeing with two eyes.  I just knew that I saw and that I wanted to be busy playing with my brothers.  My mother had long waited for a daughter after all those boys, that she could dress up – so that anything could happen to this little girl of hers devastated her and broke my father’s heart.  Family and friends thought that the “C” word connected with a child in the 1950s meant that death was imminent.  I thought the doctors and nurses and especially the nice man who created the realistic artificial eyes for me just enjoyed spending time with me.  It took me quite a while, years actually, to realize I was different from other children.  When I did realize it . . . I cried for days . . . and then went out to prove everyone wrong, that I could do anything and everything anyone else could do with mixed success. 

I was lucky to have so many brothers.  My mother hovered over me, waiting for the cancer to reoccur.  Everything was a sign of that.  I spent my time, shadowing my brothers, climbing trees, building forts, playing ball.  I wanted a bike so badly.  My mother refused to buy me a bike.  She told my father I’d kill myself trying to ride a bike.  I stole every bike I found unattended to ride.  Finally, my father told my mother that if I was going to kill myself riding a bike, it should be my own bike and he took me with him to buy a bike all my own – a beautiful purple bike with silver specks along the purple paint of the body and silver streamers from the handles.

When I became a teenager, so much changed.  I was so aware of my “handicap” as the doctors’ and my mother and her friends called it.  I thought anyone looking at me; that’s all they would see.  I decided only a fool would settle for a one eyed girl and I prepared myself for a life alone, well except for my dog and cat.  I’d always had dogs and cats following me everywhere.  I whispered my secrets and my worries to them and they whisked my fears away.  Whatever the future held, I knew they’d at least be there and we’d be okay.  I was not only a person with an artificial eye.  I was me – an intelligent, beautiful, vivacious girl.  I knew that because my dad had told me so.  I would be whatever I wanted to be.  Again, I knew this because my dad told me I could be.  Losing my dad, my best friend, in 1992, was the hardest thing I ever lived through.  It made having an artificial eye seem so small and trite.  From him, I had learned there was nothing I couldn’t do, nothing that could stop me if I wanted anything bad enough and that I was just as good as anyone else, artificial eye or not.  I believe he’s in heaven still cheering me on. 

I’ve worked in fraud investigation and auditing and am looking forward to retiring in five years.  I work with Rottweilers and black Labrador Retrievers in obedience for fun and shows.  I pray I always have at least one dog or cat to traipse around me in my journey through whatever else life holds for me.  Oh!  I did find someone who loved me dearly in spite of my artificial eye.  Actually there was more than one out there.  But I chose the cream of the crop and we’ve been together through so much.  He thinks I’m beautiful just as I am.  Together, we have two daughters, one son and three grandsons. 

My dad was right.  I can do anything I want to do."

Take care and may God bless you in all you do.

That’s wraps up this newsletter.  Again, thank you for your commitment to RBI. 
CSA

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
November 2007