Pioneers

Families come to genetic center for research
into cause, possible cure for rare disorder

July 29, 2006

By VIC MacDONALD
Index-Journal regional editor

Some who attended party offered
as concert makeup still want money returned

July 30, 2006

By BOBBY HARRELL
Index-Journal staff writer

Reggie Johnson joked with deejay Tim-E on Saturday afternoon that he didn’t want Dem Franchize Boyz music played at his party.
He even joked about breaking the deejay’s Dem Franchize Boyz records.
Johnson had good reason to be upset with the nationally known hip-hop artists: Dem Franchize Boyz failed to show up for a concert July 21 at the Greenwood Civic Center, a show Johnson’s company, RRJ Productions, booked.
Johnson said the no-show has damaged his reputation in the community.
RRJ Productions hosted a cookout and party Saturday afternoon at the R.L. Stevens Recreation Center in Greenwood to try to make amends with ticket-holders. Johnson told the The Index-Journal Wednesday that he couldn’t refund money from the concert because it was handled by Dem Franchize Boyz management.
He hasn’t been able to contact anyone with the hip-hop group to find out why they didn’t show, but he would like to have another concert as a goodwill gesture.
Saturday’s party was supposed to take place at the R.L. Stevens pool, but Johnson said someone from the civic center told him that food wasn’t allowed around the pool. So, the party was moved to a cookout area near the pool.
It also began to rain in Greenwood a few hours after the party started.
Before the rain, about 50 people, mostly teenagers, showed up for the event.
Part of making amends included purchasing more than $1,200 in hamburgers, hot dogs and ribs for the party — money that came out of Johnson’s own pocket.
Johnson also hired Tim-E to entertain partygoers.
Edward Coleman, whose family didn’t attend the party, is holding onto his daughter’s ticket. He said he wants his money back because he didn’t pay for his daughter to go to a party — he paid for her to see Dem Franchize Boyz. Coleman wants the group to refund his money — no questions asked.
Tobias Brooks, 13, bought his own ticket to see Dem Franchize Boyz with money he earned mowing lawns. He was upset when he found out the group wasn’t coming. Brooks thought the party was all right. Dem Franchize Boyz used to be one of his favorite groups, but they aren’t anymore.
“I wouldn’t even walk their way,” Brooks said.
Leatrice Harrison bought five tickets for the concert — two for her kids, two for her cousins and one for herself. She said she enjoyed the deejay and other performances, but her kids wanted the see Dem Franchize Boyz.
Sheba Hentz didn’t go to the concert, but she knows a lot of people who are upset about it.
She said she doesn’t think the blame should be placed on RRJ Productions.
“It wasn’t their fault they didn’t show up,” Hentz said.
Not everyone was as forgiving as Hentz.
Trionne Griffin sat on the hood of a car with mother Elaine Griffin as the party began to pick up speed.
They weren’t interested in joining the dance competition or eating anything from the grill. Trionne Griffin said she wants her money back. The party won’t make up for missing money, she said.
Elaine Griffin said her daughter should get her money back because she earned it attending the Gear Up program at Lander University. Gear Up is a program introducing teenagers to college.
The only way Dem Franchize Boyz and the Griffins would be square is if the group performed in Greenwood for free, Trionne said. Johnson didn’t break any of Dem Franchize Boyz records at the party. He was even open to the idea of Tim-E playing one of their songs.
“You know all the kids want to hear ‘Lean Wit It, Rock Wit It,’ Tim-E told Johnson.
The song reached as high as No. 6 on the Top 40 charts in April.
The group’s Web site is www.demfranchizeboyz.com.

Pain tempers the promise of parenthood. Affliction clouds childhood. Fear creeps in — your child is different, and no one knows why.
Will he have a normal life? Will she ever dance at her prom?
Is there a cure? “No,” the medical community says.
Your doctor isn’t sure which direction the treatment should go.
Surgery? Drugs? Nothing works.
Hopelessness closes in. Ridicule looms. Childhood can be the cruelest of times. “The Pioneers” know all these emotions, and some that the rest of us will never know.
Then, suddenly, in a small, far-off city, there’s promise.
There’s someone who wants to study your child’s disease. Someone wants you — all of you — to board a plane and fly toward the sun. It’s a new dawn of hope.
That someone is Dr. Sara Cathey, and, after the past two weeks, she is armed for battle. She will battle mucolipidosis, a disease so insidious it comes in two types — both distinctive, both maddening.
Dr. Cathey’s armaments are information, research and all the resources of the Greenwood Genetic Center focused on breaking down that most essential of the human building block: the gene.
She is going inside your family’s genes and extracting the key. She hopes it’s the key to a cure.
Families from all corners of the U.S. and Canada were in Greenwood for tests that Cathey hopes will break the vexing mucolipidosis code.
The cure won’t come right away. The Pioneers know that. But they also know if they don’t get started right now, it will never come.
Linda Nagy, of Chicago, and her family are Pioneers. They brought son Joseph to the Genetic Center for Cathey’s clinical trials, and Nagy said she helped spread the word of the “very exciting” trials through support groups for families dealing with mucolipidosis. “The more people who are involved,” she said, “the more they’ll learn.”
“It is a rare disorder. The numbers are not there to get interest from the drug companies,” Nagy said. “This is very exciting, to have somebody interested in us. This is one of the top facilities in the country.”
For Joseph, the research brings his battle with the disease “full circle,” his mom said. “Our original genetics doctor in Chicago came here,” Nagy said. “When people asked him why, he said, ‘I’ve been invited to sit at the adults’ table.’ So often, doctors know so little (about mucolipidosis). My son was misdiagnosed until age 9.”
Joseph underwent a surgery that if the Nagys had known then what they know now, they never would have approved, Linda Nagy said. Even now, 11-year-old Joseph needs hip surgery, but it is being delayed until his body is stronger.
Entering the sixth grade, he will cope with traveling distances between classes with the help of a scooter and will use the school elevators instead of stairs. He receives special education instruction because of a learning disability.
“Their care is so extensive. They see so many specialists. That’s why this is important,” Nagy said. “The kids look so different. We wonder what’s ahead in our future. We hope it (Cathey’s research) leads to treatment, but we have to pave the road.”
Nagy said Cathey, through her research, has earned herself a loyal following. “Now that we’ve found her, we won’t let her go,” a determined-to-find-a-cure Nagy said. “We’re a very tenacious group of parents.”
“We have to be advocates for our children. It’s a full-time job.”
Web site research from the National Institute of Neurological Disorders and Stokes breaks down mucolipidosis types II and III this way: “Mucolipidosis types II and III (ML II and ML III) result from a deficiency of the enzyme N-acetylglucosamine-1-phosphotransferase. Just as luggage in an airport is tagged to direct it to the correct destination, enzymes are often ‘tagged.’ In ML II and ML III, the deficient enzyme is supposed to tag other enzymes (activator proteins) so that they can initiate certain metabolic processes in the cell. Because the activator proteins are not properly tagged, they escape into spaces outside the cell and therefore cannot do their usual work of breaking down substances inside the cells.”
ML II physical signs are “abnormal skeletal development, coarse facial features and restricted joint movement,” and these signs can present themselves at birth. These children die generally before their seventh birthday. Their deaths often result from congestive heart failure or respiratory tract infections.
ML II also is known as I-cell disease.
ML III symptoms often do not present themselves until three to five years. These children generally have normal intelligence or mild mental retardation. Some survive until their fourth or fifth decade of life.
ML III also is known as pseudo-Hurley polydystrophy.
The future is bleak: “Over time, many children with ML develop poor mental capacities, have difficulty reaching normal developmental milestones, and, in many cases, eventually die of the disease,” the National Institute of Neurological Disorders and Stokes says.
Cathey said what mucolipidosis II and III families want is a measure of certainty, as far as possible through a medical diagnosis, in their lives. Should they make funeral plans or college plans?
Fifteen families were involved in two weeks of clinical trials at the Greenwood Genetic Center, and about three dozen families now have their medical histories on file with researchers. Families from New Zealand, Japan, the United Kingdom, Canada and the United States are part of the research.
In the Greenwood Genetic Center clinical trials, mucolipidosis II and III patients ranged in age from 5 to 43.
In addition to medical histories, clinical trial evaluations included physical exams, intellectual evaluations, X-rays and some skin biopsies. Cathey said the cells obtained with the skin biopsies will be important for the research that seeks potential treatments. Biochemical and molecular studies were performed on all families.
Both parents are carriers of the gene linked to mucolipidosis II and III. They will have one regular gene and one changed gene. When the child inherits the changed gene from both parents, he will have the disease.
“Because it’s so rare, affected individuals vary widely. They usually are short and may be misdiagnosed for years,” Cathey said. “All have gene changes within the same gene. Part of our goal is to figure out how is that. The more we see, the better and broader our understanding of how variable the features may be. Everyone we see has something to teach us.”
Every aspect of the Greenwood Genetic Center — more than two dozen people — was involved in bringing in the clinical trial families, making sure they were housed and fed, giving them the medical testing and counseling they needed during the trials and coordinating their returns home. Two Greenwood restaurants, McAlister’s and Beef O’ Brady’s, provided meals and what Cathey called “wonderful hospitality” for the families.
“It was a world-class effort from Greenwood Genetic Center personnel,” she said.
There is no immediate cure on the horizon. Cathey said enzyme replacement therapies are being examined and she stressed the importance of the gathering of information. “This is where it has to start,” she said.
“For so long no one had anything to say about this disorder,” Cathey said. “Last fall the gene was published ... and it snowballed from there. We decided, ‘We can look at this gene.’ Greenwood Genetic Center announced a study and told families to send your samples.
What Cathey called a “well-connected network of families” spread the word worldwide about the Greenwood Genetic Center. She said two families who came for the clinical trials said they had never seen anyone else — ever — with the same disorder their child has.
“Talk about being in the dark,” Cathey said.
Now, researchers have a mountain of information to “plough through,” Cathey said. They will pick it apart and look for the common threads among the medical histories. “When you look at as many as possible,” she said, “you can build the natural history of the illness.”
Since the mucolipidosis II and III project began at the Greenwood Genetic Center, “everybody wants it to roll fast,” mainly for the families, Cathey said. “This is the orphan of the orphan diseases.”
“They feel like it’s their turn, and so do we.”
And when mucolipidosis joins the list of childhood diseases no longer afflicting the world, then parents, children and doctors — all of us, really — can thank The Pioneers.

Local YMCA offers families
opportunity for crucial playtime

July 30, 2006

VIC MacDONALD
Index-Journal regional editor

Kids need structure. Everybody knows that.
They function best, the conventional wisdom goes, when they have activities, strict homework times and sports. High-pressure parents want little Johnny and Suzie to “make the most out of every hour.”
No way, says Richard Tait, who’s the founder of Cranium Inc., a games and toys company. Play, preferably with parents rolling around with them on the lawn or on the carpet, keeps kids fresh and imaginative, he says.
A combination of the two — structured activities and play — is part of the offerings at the Greenwood YMCA for its current summer camp program and upcoming after-school programs.
The Y runs an after-school program at its Calhoun Road facility and programs at Mathews, Springfield and East End elementaries in conjunction with the Greenwood School District 50 21st Century Learning Grant.
The YMCA hosted its annual End of the Summer Celebration for the summer camp last week. Camp staff, campers and parents enjoyed a luau dinner of barbecue with all the fixings. Each camp group, from the Greenhorns to the Pathfinders and the Trailblazers, provided entertainment through songs and skits.
This summer, the YMCA served more than 400 children ranging in age from 3 to 16 in Kindercamp, Day Camp, List (Leaders-in-Training) and specialty camps such as horseback riding, scrapbooking, skateboarding, basketball, fine arts and golf. The camp continues for one more week, for a total of 10 weeks.
“It was fun, it was hot, it was exhilarating,” said YMCA Camp Director Mandrel “Moose” Jones. “We will miss these kids, but we all made memories that we can share for years to come.”
The summer camp’s days extend from 9 a.m.-4 p.m. weekdays, but there also are early hours, from 7-9 a.m., and late stay, from 4-6 p.m., when kids have “free play” time.
Denise Manley, resource development director for the local Y, said when classes start next month, the after-school kids also will have time for play in addition to their homework time, tutoring and structured activities.
“When we started the Family Fun Zone, it was designed to bring families together,” Manley said. Parents and their kids can take advantage of the zone for activities that include the popular rock-climbing wall. Participants in the zone range in age from infants to adults, Manley said. Also, the pool schedule for the fall includes a time for parents and kids to enjoy swimming together, Manley said. Night swim will be from 6-8:30 p.m. every third Friday. Games monitored by the lifeguards will be available.
“The most popular place I see play together at the Y is the basketball court,” Manley said. “We have a lot of fathers and sons playing there.”
And during open pool times, it’s not uncommon to see parents playing with their toddlers in the water, she said. Children 6 to 36 months and their parents can participate in swim lessons. One of the Y classes, Mommy & Me Gymnastics, for children 22-36 months, also involves parents and children learning together.
Manley said the creation of West Cambridge Park has provided parents and kids a golden opportunity for play together. “West Cambridge, and the other parks too, give you a chance for the kids to play and you to talk to other adults, or for you to do activities together,” she said.

DARE officers, searches part of strategy
to keep drugs out of local schools

July 30, 2006

By LESLIE DRAFFIN
Index-Journal intern

Random locker searches, DARE officers and drug dogs are helping to decrease the number of drug incidents in Greenwood and Abbeville county schools.
“In my findings, I was happy to discover that the number of students who have been caught with drugs has decreased. The percentage dropped 38 percent from the 2004 to 2005 school year,” District 50 Assistant Superintendent Robert McClinton said. “Then, there were 13 incidents where students were found with drugs; this past year, there were only eight incidents. When you look at 16 schools with 9,400 kids in total population and you only have eight incidents, it’s pretty good, but we would love for it to be none.”
Cathy Stevenson, assistant superintendent of Abbeville County schools, also said drug incidents have decreased because of random searches and education provided by DARE officers.
“We have never really had a problem with drug incidents in Abbeville County schools. We have just been very fortunate,” Stevenson said.
Even with random searches and DARE programs in place, Keith Mallon, a VIDOC agent with the Greenwood County Sheriff’s Office, said he thinks parents are the key to keeping students away from drugs.
“We stress to parents that communication is very important. The more you find out what your kids are doing, the better,” he said. “Also, monitor their peer groups and make sure they are hanging out with good people.”
This year, high schools, middle schools, career centers and alternative schools in Greenwood and Abbeville will undergo random searches to locate drugs and weapons on campuses. “Resource officers plan to continue working to maintain the level of drug safety and awareness,” Lt. Tara Scott, of the Greenwood County Sheriff’s Office, said. “The school district has several means to do that. One is to request presence with the canine unit. Hopefully, this will act as a deterrent, if students are aware that random searches of vehicles and lockers are going on.”
“Students who are found with drugs on school campuses will be prosecuted just like they would if they were not on campus. If they are a juvenile they’ll be turned over to juvenile services, and if they are 17 or above they can be treated like an adult,” Scott said.
“The Student’s Rights and Responsibilities handbook requires all administrators to recommend students for expulsion if they are found with drugs on campus,” McClinton explained.
While dealing with drugs can be scary for many students, Stevenson says DARE officers in Abbeville County are teaching children about the dangers of drugs and what to do if they are offered illegal substances.
In order to help students feel safe, Greenwood and Abbeville county schools have developed ways to report incidents anonymously. “The identity of a student who talks to a teacher, administrator or resource officer is always kept confidential,” McClinton said.
Despite having only eight incidents of drugs on campus last year, McClinton said he thinks the increased involvement from administrators, faculty, parents and the community could help the number of drug-related incidents in school decrease even more.
“The emphasis and commitment of faculty and school administrators to place strong emphasis that it won’t be tolerated and directly addressing situations has helped deter drugs,” he said.

Jean Brodka

Jean Zelinski Brodka, 92, of Greenwood, died Friday, July 28, 2006 at Hospice House.
Born in Shamokin, PA, she was the daughter of the late Stanley and Josephine Szyskowski Zelinski. She moved to Belvidere, NJ in 1940 where she lived most of her life. In 2000 she moved to McCormick and then to Greenwood. She was employed until she retired at American Can Company in Washington, NJ. She regularly attended the Senior Citizen Lunch Program in Belvidere, NJ and in McCormick, SC. She was also active in the Hope NJ Senior Program. Mrs. Brodka was of the Catholic faith.
Surviving are two daughters, Dolores Ivins and her husband Ron, of McCormick, SC and Carol Hartung of Fredericksburg, VA; a brother Robert Zelinski of Piscataway, NJ; five grandchildren, Tracy Ivins of Hainesburg, NJ, Timothy Ivins of Phillipsburg, NJ, Abigail Ivins of Mill Valley, CA, Noel Hartung of Port Murray, NJ and Cathy Bullard of Stafford, VA; and eight great grandchildren. Services will be held at a later date in Smamokin, PA.
The family requests that flowers be omitted and memorials be made to Hospice House, Hospice Care of the Piedmont, 408 West Alexander Ave., Greenwood, SC 29646 or to the American Cancer Society, PO Box 1741, Greenwood, SC 29648.
Harley Funeral Home & Crematory is in charge of arrangements.
Online condolences may be sent to the family at www.harleyfuneralhome.com
PAID OBITUARY

Rev. Craig Hughes

Reverend Craig M. Hughes, 71 of 3716 Hwy 25 South, husband of Martha Dickard Hughes, went home to be with the Lord on Friday, July 28, 2006 at Self Regional Medical Center.
Born in Pickens County, he was the son of the late Marvin and Ressie Morton Hughes. He started his ministries in 1969 at Welcome Missionary Baptist Church for two years in Easley and then at First Baptist Church in Conestee for eight years. He was also the founder of the Foothills Christian Youth Camp. In 1980 he became pastor at Augusta Highway Baptist Church in Greenwood where he has served there for 26 years. Rev. Hughes was well known for his smile, his love for people and his love for the Lord, and will be missed greatly.
Surviving is his wife of the home; two daughters Rosetta McAlister and her husband Rev. Randy, of Liberty, and Tabatha Brewer and her husband Russell of Greenwood; a sister Jesnut Mullinax of Pickens; and four grandchildren, Shane McAlister, Travis McAlister, Evan Brewer and Heather Brewer.
Funeral services will be conducted 2:00PM Monday at Augusta Highway Baptist Church with the Reverend Jack Riffe and the Reverend Doyle Barker officiating. Graveside services will be held 5:00 PM Monday at Hillcrest Cemetery in Pickens.
Pallbearers will be Russell Brewer, Randy McAlister, Greg Pilgrim, C.W. Pilgrim and Randy Pilgrim, Shane McAlister, Travis McAlister and Evan Brewer.
Honorary pallbearers will be the men of the church.
The family will receive friends at the church on Sunday at 3:00 pm until the hour of the funeral service.
Memorials may be made to Foothills Christian Youth Camp, 3720 Hwy 25 South, Greenwood, SC 29646. The family is at the home.
Harley Funeral Home & Crematory is in charge of arrangements.
Online condolences may be sent to the family at www.harleyfuneralhome.com
PAID OBITUARY

Alonzo Jennings

AIKEN — Alonzo Jennings, 76, husband of Mary Kelly Smith, died Friday, July 28, 2006 at University Hospital after a short illness.
Born in McCormick, he was a son of the late Joe and Daisy Hill Jennings. He was employed in janitorial services in Washington and attended Zion Chapel AME Church.
Survivors include his wife of the home; a daughter, Sallie Jackson of Washington; a step daughter, Lillie Mae Cunningham of Washington; a step son, Cleveland Kelly of Aiken; two sisters, Sallie Mae Morton of McCormick and Bertha Lou Walker of Edgefield; a brother, Calvin Jennings of McCormick; eight grandchildren.
Services are 2 p.m. Tuesday at Zion Chapel AME Church, McCormick conducted by the Rev. George H. Oliver. The body will be placed in the church at 1. Burial is in the church cemetery.
The family is at the home, 1221 Chimebell Church Road and at the home of his sister, Sallie Morton, New Hope Road, McCormick.
Walker Funeral Home is in charge.

Rev. Mary A. Lipford

The Rev. Mary A. Lipford died Saturday, July 29, 2006 at Abbeville Memorial Hospital.
Services will be announced by Percival-Tompkins Funeral Home.

Earl O’Neal Weeks, Jr.

HODGES — Earl O’Neal Weeks Jr., age 35, of Hodges, SC, entered into rest to be with the Lord Saturday, July 8, 2006 at Gaston Memorial Hospital.
Mr. Weeks was a native of Augusta, Ga. He was a member of Pine Hill Baptist Church and attended Callie Self Memorial Baptist Church in Greenwood, SC. Mr. Weeks was employed with Duke Power. He was a member of the Southern Roads Motorcycle Group, an avid Harley Davidson Motorcycle rider, and he enjoyed time with and loved his family and friends. He loved hunting and fishing, www.huntn.biz/13421
Family members include his wife Shane Weeks, three children Brandon O’Neal Weeks, Justin Ryan Weeks, and Joshua Mahlon Weeks, his parents Earl O’Neal Weeks Sr. and Nancy Weeks, brother Stephen Dale Weeks and wife Sherri of Stapleton, Ga., and numerous nieces, nephews, aunts, and uncles. Mr. Weeks was preceded in death by his grandparents Thurmand and Nina Weeks and David and Kathleen Altee.
Funeral services were held at 10:00 am Friday, July 14, 2006 at Poteet Funeral Homes South Chapel with Pastor Leland Sandy Scott and Pastor Craig Hughes officiating. Interment was held at the McBean Church Cemetery.
The family received friends at the funeral home from 6:00 pm until 8:00 pm Thursday, July 13, 2006.
Memorials may be made to Callie Self Memorial Baptist Church Family Life Center, 509 West Kirksey Drive, Green-wood, SC 29646
Poteet Funeral Homes, 3465 Peach Orchard Road, Augusta, Ga. 30906. (706) 798-8886
PAID OBITUARY

When did people decide U.S. was not Christian?

July 30, 2006

In the beginning ... a Christian nation!
When addressing the Continental Army before one of the Revolutionary War battles, George Washington left little doubt about how he felt about God. “ ... The fate of unborn millions will now depend, under God, on the courage and conduct of this army... “
“Under God” was indicative of how Washington and other Founding Fathers intertwined the fate of a new nation with its dependence on God ..... their God. Since most of them were Christians, it should be clear what kind of nation they were determined to birth. Study their writings. It seems obvious they wanted a Christian nation and they set about to create one.

WHEN, PRECISELY, DID WE MAKE a collective decision that this was not a Christian nation, one envisioned from the beginning? Almost all of the signers of the Declaration of Independence were Christians. It’s clear they included Christianity in their deliberations and intentions.
Surely every child in South Carolina is taught about Patrick Henry, a patriot of the first order. They know him because of his 1775 “give me liberty or give me death” speech. Unfortunately, some of his pertinent references to God have been excluded from history books, so they are not readily available to many of us.
However, consider what Henry wrote in 1776: “It cannot be emphasized too strongly or too often that this great nation was founded not by religionists, but by Christians; not on religious (generalities), but on the Gospel of Jesus Christ. For that reason alone, people of other faiths have been afforded freedom to worship here.”

THE VERY IDEA THAT THIS IS not a Christian nation flies in the face of all those courageous men who put their lives and property on the line to win and preserve the freedom we are privileged to share today.
There are many references to the Christian foundation of America scattered throughout our history, as are numerous testimonials by Americans from the Founding Fathers on down.
It’s not a Christian nation because someone says it is, of course. History has proved it in no uncertain terms, from day one. Those who would have it otherwise work overtime, it seems, to change that. Still, history, once lived - and written - may be changed on paper. It cannot be changed in the hearts and souls of the American people, though, no matter what anyone says.