NBC correspondent Charles Sabine was an important highlight from the February 2008 CHDI conference , setting the tone for this meeting with his powerful opening presentation. Mr. Sabine-- who is known for his decades of news coverage in countries torn apart by war and disaster -- came out of the Huntington's closet. He spoke of his family's experience with the disease, and later about his own gene positive test. In his presentation he first offered heartfelt gratitude to all those who work for Huntington's; but he had other messages for CHDI and the assembled crowd: His was an eloquent plea to give hope and dignity to all families who sufffer from Huntington's. His video presentation from the HSDA website is linked below.
Mr Sabine's Huntington Analogy
He set the stage for this presentation by showing NBC news clips from from his coverage of war-torn countries, and telling stories about the atrocity and terror he has witnessed over the years. He told the personal story of his own near-death experience when a grenade was held to his head. Then the room became perfectly silent when he said,
"THAT, MY FRIENDS, IS A MOMENT OF REAL FEAR. BUT NOT THAT MOMENT, OR ANY OTHER I HAVE EXPERIENCED INSTILLS MORE FEAR, DREAD AND TERROR AS THIS DISEASE".
My Comments: This is the most graphic description I've ever heard about how it feels to be at risk for Huntington's and get a gene positive test. The tone of these words is something we all need to hear. Huntington doctors, researchers and clinical trial investigators need to know the level of stress that we, or our loved ones feel when encouraged to step forward to test or enter clinical trials. Perhaps with this understanding, more adequate support protocols or systems can be put in place to help those who must deal with this heroic stress, whether this is after gene testing or as part of a clinical trial. Genetic counselling should not end with the gene test. The caring support should increase following testing and throughout the entire course of clinical trials.
On Hope: He didn't end his speech on fear, but bravely went on to use the hope and now words: "BUT EVEN AFTER A QUARTER OF A CENTURY OF SEEING THE VERY WORST THAT MANKIND CAN INFLICT ON FELLOW HUMAN BEINGS, I HAVE NEVER COME ACROSS AN ONGOING TRAGEDY THAT DRAINS PERSONALITY WITH SUCH UNREMITTING FORCE AS HUNTINGTONS. NOTHING THAT HAS OFFERED SO LITTLE HOPE. UNTIL, PERHAPS, NOW".
And he went on with this challenge, "I KNOW YOU DON'T WANT TO RAISE FALSE HOPES, BUT UNDERSTAND THAT IN A WORLD OF TOTAL DARKNESS - STARLESS AND BIBLE BLACK - THE VERY FAINTEST GLIMMER OF LIGHT EMBOLDENS THE HUMAN SPIRIT TO GO ON. WHAT YOUR WORK OFFERS TO US IS A TREASURE BEYOND COMPARE BECAUSE IT EMBODIES HOPE. AND HOPE IS EVERYTHING."
My Comments: I couldn't agree more; hope is a word we can -- and should -- be using. Hope is a feeling we should not be afraid to have now. As later CHDI presentations showed, there is realistic chance of treatment in our lifetimes, or at least those of our children.
On Dignity: He said that Huntington's is " A COMMUNITY HIDDEN BY ITS OWN SHAME AND MADE TRANSPARENT BY A VACUUM OF SELF ESTEEM." He implored the entire community to work together and to let nothing impede progress.
" NOT THE STIGMA THAT HAS MADE VICTIMS ASHAMED TO STAND UP AND BE COUNTED AS PEOPLE WHO NEED THE SUPPORT OF THE COMMUNITY AND THE STATE. NOT THE IGNORANCE AND PREJUDICE THAT HAVE STOPPED THEM BEING REPRESENTED IN THE COURT OF PUBLIC CONSCIENCE. BECAUSE YOU KNOW AND I KNOW, FOR GENERATIONS THEY HAVE NOT BEEN.
NOT ANY RED TAPE THAT COULD STAND IN THE WAY OF TRANSLATING THE ADVANCES IN YOUR LABORATORIES TO THE HOMES OF THE VICTIMS.
NOT EMPLOYERS WHO NEED TO BE RE-EDUCATED OR LEGISLATED AGAINST TO ENSURE HUNTINGTON GENE CARRIERS NO LONGER FEEL AFRAID TO ADMIT THEIR CONDITION.
AND NOT DISUNITY IN THE HUNTINGTONS COMMUNITY. ALL THE KEY PROTAGANISTS IN THIS FIGHT MUST PULL TOGETHER AS ONE IN THE SAME DIRECTION.
My Comments: Nothing to add here but our thanks to this special and courageous man! He spoke so well what is so hard for all us to say. And he challenged us all to work harder, better and together.