Sunday, October 17, 2010

The launch of The Dawson Schleroerma Foundation at Carlton Hotel on October 6, 2010 in New York City. FASHION FOR A CAUSE

The launch of The Dawson Schleroerma Foundation at Carlton Hotel on October 6, 2010 in New York City. (Photos by Anna Kuchma)

Swizz Beatz and Courtney Dawson by Anna Kuchma

The Dawson Scleroderma Foundation is a non-profit organization dedicated to improving the quality of life, health and socioeconomic impact of Scleroderma for patients through personal enrichment, empowerment, and support. We strive to increase awareness and understanding of this life threatening degenerative disease and to raise funding for research that can help provide early detection of Scleroderma and eventually a cure.

Model Jaslene Gonzalez with David Meister
At the event, red carpet designer David Meister  will preview his spring collection with a celebrity filled runway show styled by Lauren Rae Levy, beautiful and brilliant celebrity fashion stylist. Runway garment alterations for the show by Madame Paulette. Ramona Singer will showcase her new line of jewelry while the event is filmed for the Housewives of New York City. Guests will enjoy a silent auction featuring some one-of-a kind items donated by designers such as Alexander McQueen. Both the runway show and the following musical performance by Interscope Record’s hottest new artist, Jared Evan, will run on a live feed outside on the Carlton Hotel building facade. Good Morning America is set to feature the event the morning of and fingers are crossed that Jared Evan will preview his performance.

Scleroderma is a debilitating and too often fatal auto-immune disease that affects 300,000 people across our country. Scleroderma itself means "hard skin". The hardness is caused by increased production of collagen and other proteins that cause skin thickening and replaces normal skin structure with scar tissue. Scleroderma can be a devastating disease and the same thickening process may occur in the blood vessels, the lungs, the kidneys, the intestinal tract and other key organs.

Research over the last two decades has lead to improved treatment for scleroderma and has improved both survival and function for individuals with this disease. While this improvement is welcome, the fact is there is no cure and that individuals continue to be disabled and die from the disease. Those with widespread skin and organ involvement have a negative prognosis with life expectancy 5-10 years after diagnosis.

Establishing The Dawson Scleroderma Foundation has become my own therapy. My hope is to be able to help others who have the same disease; to take a devastating, life changing event and turn it into something positive. Scleroderma can cause you to feel completely isolated from the rest of the world. It is a struggle to cope with every day because it can be extremely painful, both physically and mentally. There is no cure for Scleroderma. The medicines that are prescribed are simply used to treat the symptoms and improve the individual’s quality of life.

Living with Scleroderma is a fight that has no ending. I have always been a competitor, having played sports in high school and college, so I love to fight…win or lose. But it doesn’t work like that with this disease. I can’t psyche myself up by saying “Ok, I am going to fight this disease, win or lose”. Scleroderma doesn’t allow you to win, then share the victory with your loved ones and continue on with your life. The only thing you can do is build a solid platform to stand on and prepare to fight for the rest of your life. It is a battle without an end.

There has been a positive side, however, to facing life with this disease. I can honestly say that I have lived more of my life in the last 3 years than all the previous 30 combined. I am so thankful for the circumstances that surround my life now and I truly feel ALIVE…really, really alive.

Now I hope to give that peace and serenity to others suffering from this disease. I want to empower them with the tools to fight this fight and to cope with this disease the best way possible, -to bring joy back into their lives. This, in turn, will do the same for me.

Slide show photos from the rest of the night



1 comment:

  1. I too have "The Big S"
    Well said with regard to, a battle with no end.

    I don't think people understand that concept. Something has highjacked my life - and I will never get that life back.

    It is a series of losses, readjustments and finding a new "normal" - always changing, therefore always trying to find and feel that "new normal"

    The Big S does not play fair. You wake up one day and can use your arms, feel pretty okay and makes plans for tomorrow...but you wake up that next day and your arms don't want to work and you are so tired with soul crushing fatigue that getting downstairs to get your coffee deserves the "Rocky Theme" to go off.

    People don't understand because "You don't look sick" so the expectations of the "old you" are still there - only that YOU is gone forever.

    I have had people say, "well at least it's not cancer" - to which what do you reply?

    That is why I like the way you described it, very poignant "Scleroderma doesn’t allow you to win, then share the victory with your loved ones and continue on with your life."

    We will always live with this disease and we will die by this disease.

    Thank you for spreading the word for this rare disease that affects more than multiple sclerosis - yet no one has heard of.

    I would love to get involved!

    I have a blog about my experiences at