a letter to MARIA SHRIVER,
          
     july 16-17,1963 i had a baby brother named teddy. he had been born prematurely and weighed 2lbs.8oz. my mother had contracted german measles while pregnant. i remember it still,like it were yesterday,even tho it was a month and a half before my 4th birthday.
     the doctor said if he had lived he would most likely have been severely retarded,physically handicapped and possibly blind,so his death was probably best for all of us.i disagreed with him on that last part,i just wanted my baby brother alive.my other siblings and i never saw teddy and were not allowed to attend his funeral,as far as i know he was not even photographed.
      as a family with  many elderly relatives we had been to funerals before and so i didn't understand not being allowed to go to the funeral of my very own brother. also,i didn't understand how a baby could die,being that the other relatives were elderly and had died of natural causes. i wondered at the time if he had somehow gotten old before he was born,if he had been inside of mom while she was inside grandma.that was when i figured out my parents,my older siblings and even i could die.
      teddy wasn't talked about much,but i did learn, sometime later,that my father had 2 older brother who had died of crib death. his mother lived with us,as did his father until his death in 1962. so my father and my grandmother had never lived apart and now i knew why. i knew now why she doted on him so... and i understood her pain and my parents pain at the loss of a child and or children. 
        i remember PRESIDENT JOHN F. KENNEDY while he was in office and the KENNEDY FAMILY during what would be the end of the CAMELOT years,as his assassination was that fall after teddy passed. i knew your families pain and wept for you.
        sometime after that i remember your mother in her crusade for,in terms of the time,the mentally retarded.i remember seeing her with the special Olympics children and thinking,to myself,of my brother teddy.wondering,as i looked at their smiling faces and their accomplishments,which child would he have been the most like,what could he have accomplished...
          i loved your mother for that... for,the much more positive view of how my brothers life may have been and a much more positive view of myself for having disagreed with that doctor who had said my brothers death was probably best for all of us.

          so now,all these years later i find myself on my own crusade. one of trying to save lives and the quality of those lives,one to open the eyes,hearts and minds of doctors,parents,teachers,parents to be and more,to the possibilities of STOPPING as many intellectual and physical disabilities BEFORE they happen as we can and to lesson the depths to which they occur in association with other diseases,disorders or illness.
         
       i am speaking of STROKES, ANEURYSMS, CERTAIN SEIZURES and more for INFANTS, CHILDREN AND ADULTS: STROKE IS THE #1 CAUSE OF DISABILITY IN ADULTS IN THE US AND 1 OF THE TOP 10 CAUSES OF DEATH IN CHILDREN!!!!!
           I HAVE JUST READ THIS 1ST UPDATE FOR THE FIRST TIME JUST NOW AND I AM ECSTATIC !!!!!! what perfect timing!!!!!

Research Update « Moya-Moya.com DONATIONS ACCEPTED... please visit link for more info...

Research Update

Per Dr Edward Smith:
The Department of Neurosurgery at Children’s Hospital Boston is grateful for the substantial and ongoing support of the Justin Doo Moyamoya Reseach fundraising efforts. Through the efforts of the Doo family and their generous contributors, significant advances have been made in the understanding and treatment of pediatric moyamoya.
Children’s Hospital Boston (CHB) has been ranked #1 by US News & World Report in Neurosurgery and a major part of this ranking is derived from the expertise that CHB has in cerebrovascular disease. In addition to unparalleled clinical expertise in the treatment of moyamoya, the cerebrovascular surgical team at CHB, led by Dr. R. Michael Scott and Edward Smith, has a dedicated research enterprise with a specific focus on moyamoya. Over the past year, several major advances have been made, including:
1. Discovery of two new biomarkers, able to be detected in the urine, that help to identify the presence of moyamoya non-invasively in children.
2. Development of an animal model that allows the testing of new therapies for moyamoya, including delivery of molecules designed to enhance the speed and coverage of new blood vessel growth derived from the surgical treatment of moyamoya.
3. Activation of a new, web-based, HIPAA-compliant moyamoya database that links – for the first time – clinical, imaging and research data. This is the largest pediatric moyamoya database of its kind in the US.

In addition to these laboratory advances, research from the Smith laboratory and translational work from Dr. Scott and Dr. Smith has been presented at numerous meetings, including the International Moyamoya Working Group in Switzerland and the American Association of Neurologic Surgeons. Efforts from the CHB moyamoya program have been recognized in publications over the past year, with particular note made of the invited paper on new evidence-based guidelines on pediatric moyamoya (J Neurosurg Pediatr. 2012 Apr;9(4):353-60).

The previous year has witnessed significant advances at Children’s Hospital Boston in the understanding and treatment of moyamoya in both the clinics and the laboratory. Much of this work was possible solely because of the Moyamoya Research Fund, generously and substantively supported by the Doo family. We are immensely excited about the upcoming projects in the laboratory, with new discoveries fueling the potential for novel treatments for children with moyamoya. The rarity of this disease means that funding is difficult to find and this underscores the incredible importance – and impact – that the fundraising efforts of the Doo family has on advancing the field of moyamoya research. We are incredibly thankful for the support of all those that contribute to the Doo’s efforts and look forward to sharing our new discoveries next year at this time.                                                                                                                                 

 AGAIN~PLEASE VISIT  MOYA-MOYA.COM LINK ABOVE FOR MORE INFORMATION!

FOR MORE STROKE AND MOYAMOYA YOU CAN FIND LINKS, ARTICLES AND MY OWN PERSONAL EXPERIENCES THROUGHOUT MY BLOG POSTS 
             INCLUDING :  SEPTEMBER 14,2012
                                         JUNE 5,2012 
                                         APRIL 24,2012 
                                         APRIL 4,2012 
                                         MARCH 12,2012 ...2ND LETTER TO PRESIDENT OBAMA
                                         MARCH 10,2012 ...A LETTER TO PRESIDENT BARACK OBAMA
                                         JANUARY 12,2012 
                                         NOVEMBER 20,2011 
                                         NOVEMBER 2,2011 
                                         OCTOBER 30,2011

THANK YOU SO VERY MUCH 
                                       FOR GIVING ME THE BEAUTIFUL GIFT 
                                                                                                    OF REMEMBERING YOUR MOTHER                                        

WITH LOVE,ADMIRATION AND GRATITUDE,
PEGGY