EXCERPTS FROM JASON B ROSE,
DIAMOND BLACKFAN ANEMIA SURVIVOR
& KEYNOTE SPEAKER FOR THE 9TH ANNUAL DIAMOND BLACKFAN ANEMIA
INTERNATIONAL CONSENSUS CONFERENCE FOR THE DANIELLA MARIA ARTURI FOUNDATION MARCH 2008, NEW YORK CITY ____________________________________

Let me talk for a moment about Diamonds. I have taken some literary license when I talk of Diamonds. Because there are so few of us who are in remission I like to think of we few as Diamonds. In addition to the survivors in remission, there are also Diamonds in progress and Diamonds soon to be. The goal of all of us here tonight to find a way to transform all DBA patients into Full Diamonds. That is the ultimate goal that all of us pray for.

It takes spirit to survive DBA. What is spirit? Spirit is faith and hope fortified by positive action. Spirit makes people survive. Spirit keeps you working on a cure. Spirit is the reason why people do great things. Spirit is what motivated my parents. Spirit is what helped me survive.

When you return to your practices and laboratories pick up your DBA children, hold in your hands the hands of those adult DBA patients, look into their eyes, look into their blood, and tell them that you are committed to finding a better treatment, and a cure for Diamond Blackfan anemia.

If it takes 10 years, if it takes 20, no matter how long it takes we must never, never give up our hope for finding a better treatment and cure for Diamond Blackfan Anemia. We must continue to support funding for scientific research for the development of new medicines, new treatments, and continue to support programs for our Diamond Blackfan Anemia family.

Because of your commitment the foundations are strong and ready to build higher, and higher. You have the power and spirit to inspire your patients, their families, and your colleagues to be invincible, fearless, unstoppable and indomitable in our search for a cure.

One day, every Diamond Blackfan patient, man, woman, and child will finally hear these words, “We have found a cure..” One day, every Diamond Blackfan Anemia patient, man, woman, and child will become a Full Diamond. It all begins with you giving the greatest medicines called Hope and Spirit. It is an awesome challenge and you can make it happen.

I want to look up into the night sky and see the shining light of even more Diamonds.

I want newly diagnosed Diamond Blackfan patients to see the bright light of the Diamonds and know that there is hope. Each of one you here tonight have spiritually, and metaphorically picked me up, held me in your arms, looked into my eyes, and helped me survive. I love my life now and the people who are in it.

Every day is a new adventure because of people such as you have the spirit to do what has to be done. And because you were there for me to clear my path. Every Diamond has a story, and this has been my story I am Jason B Rose, I am a Diamond Blackfan Anemia Survivor.

Because you make it possible for others to live. Thank you.