Wednesday, January 18, 2012

A New Day Has Come For Children With Sickle Cell Disease

(photos by Denise Truscello/ WireImage)

On January 15, 2012 Play Without Pain: Children’s Hospital Sickle Cell Benefit at The Colosseum in Caesars Palace began with Gary W. Loveman, Chairman, Chief Executive Officer and President of Caesars Entertainment Corporation thanking everyone for supporting this life-changing event. He explained the alarming statistics of children suffering and dying from the complications of sickle cell disease, and the important work being done at Children’s Hospital of Boston to find a cure. “Children’s physician-researchers have done what others have tried to do for decades; they’ve found a way to override the sickle cell defect,” he said. Mr. Loveman then introduced the team of doctors led by Dr. Stuart Orkin and Dr. David A. Williams, who are behind the breakthrough strategies to “flip the switch” on Fetal Hemoglobin F (HbF) and cure sickle cell disease once and for all. “Hope,” he said, “is in sight.”

Enter Celine Dion and Rene Angelil, AEG Live, Children’s Hospital Boston, Southern Wine & Spirits, Angel Management Group, Restaurant Guy Savoy, and countless other sponsors too numerous to name. Only heaven bestows such star power. The rest was history in the making.

As Celine walked onto the stage, a new day dawned for children with sickle cell disease. When she began to sing angels smiled, clouds parted and the rain of hope fell like a beautiful waterfall. With the voice of perfection, accented with flawless wardrobe changes, and make-up sprinkled with tears, Celine’s heart was fully exposed.

While I listened to Celine perform, like only Las Vegas could contain, I looked around the Colosseum in amazement. I was witnessing history. When Celine cried, I cried. God allowed me to live to see the dawning of this new day.
(photo of Celine and A.J. Green, young man with sickle cell)

As Celine sang, my heart sang,

“I see a light in the sky
Oh, it’s almost blinding me
I can’t believe I’ve been touched by an angel
With love

Let the rain come down and wash away my tears
Let it fill my soul
And drown my fears
Let it shatter the walls
For a new sun
A new day has come
A new day has come.”
(song by Aldo Nova & Stephen Moccio)

I may not see a cure for my sickle cell disease; I’m too old for these new procedures. I see, however, the light shining for children with sickle cell disease…………can you see it?

Thank you Melanie, Caesars Palace, Celine and Rene, Children’s Hospital of Boston, and the numerous sponsors of Play Without Pain: Children’s Sickle Cell Benefit. You are all partners in giving the gift of life. Put on your sun glasses, it’s gonna get bright.

(photos by Denise Truscello/WireImage)

Sunday, January 8, 2012

2012 - The Year of SCD Awareness

All I can say about the coming year of 2012 is WOW!!!!!.

I have heard more about Sickle Cell Disease in the last six months than I have in the past five years. That is partly due to the tireless voices of SCD patients speaking out, SCD Associations not giving up the fight, and a renewed national commitment from American government agencies like National Institute of Health (NIH/NHLBI)) and Center for Disease Control (CDC).

What the focus seems to be leading toward is psycho-social help and improved care/treatment for adults with SCD. That is a good thing.

Another good thing is the 2012 calendar filling up with events, support services, conferences, and meetings about Sickle Cell and related blood disorders.

Our Voice, the voice of people living with sickle cell disease, will continue to speak out bringing information and education globally. I'm excited about the future so stay tuned. I'll post events as they come my way.

One big event coming January 15, 2012 is Celine Dion at Caesars Palace. She will play a charity show to support Children's Hospital Boston "Play Without Pain Children's Sickle Cell Benefit."

This is a wonderful thing!!!!!

Click here for ticket information & concert link