Leading the way to a cure

Lupus Research Update: 2013 Volume 2

Volume 2, 2013 | In This Issue

Lupus Clinical Trials - People Advancing Science >
Insights into Clinical Trials - One Doctor's Perspective >
Faces of Lupus - Transforming Personal Loss into Hope for Others >
Lupus News Corner >

Faces of Lupus

Transforming Personal Loss into Hope for Others

Claudine Mauriello's long and fruitful relationship with the ALR began matter-of-factly with the opening of a brochure in her doctor's office. She took the ALR Walk with Us to Cure Lupus pamphlet home and announced to her family: "I'm going to raise money for them."

And that's exactly what Claudine has been doing ever since. "I think I raised $7,500 in 2002, that first year," she said with modesty.

As far as the ALR is concerned, this determined woman has nothing to be modest about. Claudine is a great advocate for lupus research and a tremendous friend to the ALR. In the ensuing 10 years, she has raised more than $150,000 for the organization.

This would be a remarkable feat for anyone — let alone someone like Claudine whose firsthand experiences with lupus frequently have been daunting ordeals. In fact, her life has been completely turned upside down since she first showed symptoms, nearly 20 years ago.

Claudine is a dietician and at the onset of her lupus, she was working at the University of Southern California Medical Center. She was having difficulty one day while doing rounds with the doctors — which turned out to be fortunate timing. They immediately brought her to the rheumatologist.

But that was just the beginning of Claudine's troubles. Because lupus often mimics other illnesses, a diagnosis can take time — and the symptoms are difficult to treat. "Back then, there was no definitive test but one doctor said I definitely had lupus. I was devastated and didn't know exactly what it meant."

Reality sank in when one of the many doctors Claudine later saw said to her: "You really need to go home."

Unfortunately her trials continued on the east coast. Her doctors didn't know what was going on with her. "Everything was swelling up. I have central nervous system involvement," said Claudine. "I was getting forgetful, I didn't know what was going on, and I started to get nervous."

Worse still, lupus has shut down her GI tract. "I haven't eaten any solids in the past nine years. My surgeon told me he had never seen such a diseased GI tract. My bowels were dilated 10 times the normal size," she went on to say.

Claudine has been on every possible lupus treatment, with little help in alleviating her physical condition. But her mental outlook has not been diminished. She remains optimistic and even ran the NYC Marathon in 2011!

Her zest for life also translates into advocacy and fundraising for the ALR: "It's not about me anymore. It's about finding treatments for everybody."

Raising funds for the ALR is one of the ways that Claudine shows gratitude for the groundbreaking work that the organization has made in lupus research — particularly the landmark discovery of the specific genes linked to lupus and the funding of inquiries for treatments now in the pipeline.

"I like the ALR's mission," Claudine shared. "It is all about research. But I also like knowing that 100% of the money raised goes toward finding a cure for this terrible disease."

Helping the ALR is a family affair for Claudine. She enlisted the support of her father about five years ago. Today, Joe Mauriello is an ALR Board Member, and like his daughter, he is one of the organization's staunchest allies.

1.5 million

people in the U.S. have Lupus.

172 million

dollars committed to lupus research by the Lupus Research Alliance.

We're walking across the United States to raise awareness and funds for lupus research.


Show your support by visiting the Lupus Research Alliance online store. Discover the perfect gift, or prepare for a walk with our selection of apparel and accessories.

Powered by Blackbaud
nonprofit software