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Hampshire man fights blindness for children

Steve Phyllis Hamby Hampshire

Steve and Phyllis Hamby of Hampshire

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How to help

The Chicagoland VisionWalk this year is slated for Sunday, June 9, in Busse Woods. Registration begins at 9 a.m. The walk starts at 10:30 a.m.

For more information on the 2013 VisionWalk, call 847-680-0100; MDiVincenzo@FightBlindness.org.

Updated: February 17, 2013 6:24AM



HAMPSHIRE — Steve Hamby’s children are his heroes.

Hamby is the group vice president at TransUnion in Chicago. He has worked for the company for the past 30 years. Steve; his wife, Phyllis, and their two grown children, Stephanie, 27, and Jared, 24, have lived in Hampshire for the past 15 years.

In 2009, when Jared was a college sophomore, he was diagnosed with Usher syndrome. One year later, Stephanie was diagnosed with the same disease.

“They have both had congenital hearing loss since birth,” Steve said. “Their hearing will remain stable, but vision loss is progressive. Their biggest challenge is night blindness. Dimly lit rooms are hard to navigate. They have to memorize how many steps there are in the house.”

According to Foundation Fighting Blindness, “Usher syndrome is an inherited condition characterized by hearing impairment and progressive vision loss. The vision loss is due to retinitis pigmentosa, a degenerative condition of the retina. Researchers estimate that as many as 50,000 people in the United States have Usher syndrome. Worldwide, it is the leading cause of combined deafness and blindness.”

Hamby said that his children do not allow Usher syndrome to keep them down.

“They have an amazing amount of grace,” Hamby said. “They don’t let the disease stop them from living their lives.”

When Jared was diagnosed with Usher syndrome, his parents decided to become involved in raising money to fight the disease.

Hamby has been a key leader for Chicagoland VisionWalk since 2009. He chaired the event in 2011 and 2012 when the walk surpassed its fundraising goals of $285,000 and $310,000. His own “USHERing in a Cure” VisionWalk team consistently raises more than $40,000 for research every year. Phyllis is the former president of the Chicagoland chapter.

Hamby was recently appointed as a national trustee of Foundation Fighting Blindness.

“Steve Hamby’s dedication has truly helped fuel our pursuit of vision-saving treatments and cures,” said William Schmidt, CEO of the foundation. “We’re thrilled to welcome him to this special group of Foundation Fighting Blindness leaders whose ongoing passion to advance retinal research is integral to our success.”

The foundation was established in 1971. Its goal is to drive the research that will lead to preventions, treatments and cures for blinding retinal diseases including macular degeneration, retinitis pigmentosa and Usher syndrome.

The foundation has raised more than $500 million since its founding. Foundation-funded clinical trials of gene therapy have restored vision in patients who were virtually blind from a childhood form of retinitis pigmentosa. They can now enjoy activities such as reading and playing baseball.

With a network of nearly 50 chapters, the foundation also provides support, information and resources to affected individuals and their families across the country.

“The foundation has been a godsend,” Hamby said. “People who have been diagnosed with retinal disease need hope. The foundation gives them a chance to meet others. They don’t have to go through it alone.”

Fifty walks to raise money are held across the country. The Chicagoland VisionWalk originally was held in the city. For safety reasons, it was moved to Busse Woods in Elk Grove Village.

“Last year, we planned for 900 participants and had 1,200 people,” Hamby said. “This year, we are expecting an even larger group. Approximately 77 percent of every dollar raised goes to research.”

The Chicagoland VisionWalk this year is slated for Sunday, June 9, in Busse Woods. Registration begins at 9 a.m. The walk starts at 10:30 a.m.

Chicago sports broadcaster Rich King’s first wife, Maggie, battled Usher syndrome along with breast and ovarian cancer before she died in 2002. King wrote a book about her called “My Maggie.”

Hamby wrote a book titled “Usher Me Home” that was published in 2010. A portion of the proceeds benefit the foundation.

“It’s Christian fiction,” Hamby said. “The father, Greg Bagwell, is a painter who has terminal cancer. His children, Jared and Lindsey, have Usher syndrome. The father decides to hold a living memorial in a movie theater. It’s a book about forgiveness. The book is drawn from life to help find and fund a cure for Usher syndrome.”

In the book, Lindsey knows she has Usher syndrome but keeps the information to herself. She also learns that she is going to have a baby.

In real life, Hamby did not know that his daughter was pregnant when he was writing that her fictional counterpart was pregnant.

Hamby and his wife both carry the recessive gene that can cause Usher syndrome. Stephanie married Willy Nelson, whose family does not have a history of the disease. When Willy and Stephanie’s daughter, Chloe, was born six months ago, she was tested and found to have perfect hearing.

“Chloe is extremely alert,” Hamby said.

When Stephanie was diagnosed with Usher syndrome in 2010 and faced the possibility of losing her sight, she told her father that one thing she did not want to miss was seeing the face of her child. Hamby said that this wish came true.

For more information on the 2013 VisionWalk, call 847-680-0100; MDiVincenzo@FightBlindness.org.



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