|Local teen helping to make a difference in her mom’s fight against Lupus|
On April 30, 2014, Savannah Robinson, 17, of Georgetown, will host the first ever “Champ’s Ball,” A Night to float like a butterfly for a disease that stings like a bee. The event’s premier sponsor, The Muhammad Ali Center, will also be the site for the event to benefit the Alliance for Lupus Research (ALR).
“When I was very young my mom was diagnosed with lupus and has been battling it ever since,” said Robinson. “As a kid, it was not easy understanding why my mom was so sick; and, as you could imagine it was very scary.”
“My mom is my hero she is an amazing person, who has conquered some amazing obstacles. She means more to me than anyone will ever know. Since I was little I have done projects centered on lupus from walks to educational posters,” explained Robinson. “I thought it was time I took more action. So after a brain storming section ‘The Champ’s Ball’ was born.”
Robinson went on to explain that she was 15 turning 16, she approached her premier sponsor.
“I explained my whole story,” she said. “I explained my background and how hard it was to watch my mom fight lupus every day and I thought she was “Champ” like Muhammad Ali. I explained how this disease that left a “butterfly” rash (known as a malar rash) on the cheeks of many lupus patients stung like a bee. I pointed out our similar backgrounds and how did not want my mom die before they found a cure.”
Now using a form of Muhammad Ali’s famous “Float like a butterfly,” the teenager takes on the endeavor of a lifetime planning a ball for lupus.
“My ultimate goal would be to find a cure,” says Robinson. “But, I think this is a start and we are getting close.”
Robinson has a goal of raising $100,000 and to spread awareness along the way. That could make a great difference to the 1.5 million Americans suffering daily.
“Not many people talk about lupus,” said the now 17-year-old. “I want to start a world-wide conversation on a unknown disease. With so many suffering how can we not want to know more about such a strange illness.”
“Lupus is a scary disease,” she continued.
Robinson explained that lupus can attack any organ in your body. Lupus is an autoimmune disease that affects 1.5 million Americans, mostly from ages 15-45 and of ethnic descent and 5 million across the globe according to both ALR and the Lupus Foundation. Both sources also state that can also affect children, but in those cases is more likely to lead to worse symptoms and even death. There is no known cause or cure. Systematic Lupus can effect anywhere from your heart to your lungs.
“The best way to explain it is to imagine you have hired a bodyguard and an attacker comes up,” clarified Robinson. “Instead of protecting you, your bodyguard turns against you. This is essentially what your antibodies are doing within you.”
In efforts to find a cure, Robinson choose the Alliance For Lupus Research and 100 percent of all proceeds go directly to ALR. Founder and New York Jets Owner Woody Johnson pays the salary of staff members at ALR to ensure dollars go into research to help find a cure for his daughter (also named Jamie) that is currently suffering from lupus too.
The Champ’s Ball, A night float like a butterfly for a disease that stings like bee, honors all lupus patients across the world fighting their battles with systemic lupus. The night will open with a spectacular breathtaking butterfly release on the balcony of Premier Sponsor’s Ali Center weather permitting.
Each butterfly has come kindly donated from Cloverlawn Butterflies with a special
inscription embroidery on the release envelope. Local artists from the Southern Indiana Arts Center will capture the evening’s activities on canvas as they paint live auction pieces for the event. Their artwork will be auctioned off that night during the silent auction.
Event goers can enjoy cocktails and h’dorves from Masterson’s Catering during the silent auction followed by dinner and a program honoring unveiling a special tribute exhibit.
Former Miss America and World famous fashion designer Heather French Henry will help Robinson night honor some very special people including Mr. Johnson for his work, a local doctor, The Survivor’s Award, The Champ’s Award and so much more!
The Monarch’s, celebrating in their 50th anniversary this year, will also help gala goers that evening to enjoy music and dancing. (The Monarch’s also have band member who mom battles lupus.)
For more information on purchasing tickets visit www.thechampsball.org. A portion of the ticket purchase may be tax deductible and all tickets are being purchased through ALR.
For more information on lupus visit the Alliance for Lupus website at
May is national lupus awareness month.
|Last Updated on Wednesday, 26 March 2014 13:04|