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Family Seeks Help for Child with Rare Disease

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By Alice Thomas-Tisdale
Special to the NNPA from the Jackson Advocate Publisher

On June 25, Janiya Bowens will be 10 years old. Quite a feat for Jackson’s little champion. Since age six, Janiya has struggled to maintain her balance, keep her eyes open, move her limbs, keep her food down, swallow, and lately, smile or utter a single word.

Janiya suffers from spinocerebellar ataxias. It is a hereditary defect in a certain gene that makes abnormal proteins. The abnormal proteins hamper the ability of nerve cells, primarily in the cerebellum and spinal cord, to function properly and cause them to degenerate over time. As the disease progresses, coordination problems worsen.

According to the Mayo Clinic, researchers have labeled 28 autosomal dominant ataxia genes with the designation SCA1 through SCA28, generally numbered according to their order of discovery, and the number continues to grow.

Janiya suffers from SCA2, only the fifth known type case in the world. Janiya’s family is fully committed to making sure she has every chance of survival. The current challenge is fighting Medicaid’s refusal to approve therapeutic intervention, such as physical, occupational and speech therapy.

“Janiya’s doctors don’t know what’s going to happen to her. They don’t know enough about the disease. It’s so rare,” says grandmother, Lois Bowens. “We think Janiya may be the only child and only black person with SCA2. It took a long time to even find out what was wrong with her. We don’t know what to do either, but we have to keep trying different things. We can’t give up on her. What we learn will help others.”

Last March, the Make A Wish Foundation sponsored a trip for the family to Disney World. Since returning, they still feel like they are on a roller coaster ride. Janiya’s ability to breathe and swallow declined significantly. Emergency visits to Baston Children’s Hospital at the University of Mississippi Medical Center increased, but so did the discharges, because the only therapy available to her were ineffective.

The last 10 months have been increasingly challenging for Janiya and her family, even with the assistance of a duty nurse 16 hours a day, 7 days a week. In July 2012, a tracheal tube was surgically inserted. Janiya hasn’t smiled or spoken since.

“If we could just try the speech therapy; just try it! We don’t know if it will work, but we should try,” says mother, Ardra Bowen. “My child is so beautiful when she smiles. I miss her smile so much. All I have are pictures of her smiling. I want her to know she can talk. With the trac in her throat, she doesn’t know she can talk. Once she hears herself make noises, I think she will begin to try words. I believe a speech therapist can help her.

“Janiya also needs occupational and physical therapy,” says Ardra. “Medicaid won’t pay for it because they say they don’t know if it will help. I don’t know what else to do but find another way to pay for the therapy. I know we can’t afford to pay for it. I have three other children who do not have the disease. It’s hard on the two older ones to watch their sister struggle to breath. Of course, my newborn doesn’t know what’s going on.

“It’s a lot on us, but we don’t complain because we love her so much. Janiya is a wonderful child. Before she got sick, she was so full of life. She knew everything and everybody. Now, nobody can tell us what will happen to her. She’s still in there fighting so hard to do the things she used to do. We can only pray we can get her some therapy before it’s too late.”

Health care advocates, agencies, philanthropists, businesses, churches, organizations, or others in a position to assist the Bowens family with acquiring speech therapy, occupational therapy and physical therapy are encouraged to call Lois Bowens at 601-669-6343.

Autism Often Goes Undetected in Black Kids

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By Freddie Allen
NNPA Washington Correspondent

WASHINGTON (NNPA) – Areva Martin watched her youngest child play with growing concern. Marty was almost 18 months old and he didn’t play like other kids his age. Instead of racing toy cars on a track or across the floor, Marty would organize them in lines. He did the same thing with crayons. Instead of scribbling on paper or trying to color, he would just line them up. Marty played obsessively with random objects that he would find around the house: a house shoe, a cup, or a spoon would consume hours of playtime. But Martin, a lawyer living in Los Angeles, was most concerned about his speech.

“The first thing that came to my mind was, ‘This kid isn’t speaking, so let’s get him to a speech therapist,’” she said. After several months with a speech therapist, and no signs of improvement, Martin took her son to a developmental pediatrician. That’s when she learned that Marty was autistic.

“I knew very little about autism. I wasn’t even thinking about autism,” said Martin. “It wasn’t even a word in my vocabulary.”

Martin was devastated when she got the news, but then the lawyer in her kicked in. Martin needed to fix the problem, to get her so a cure as soon as possible, but the mother of three quickly learned that there is no cure for autism and researchers are still working on what causes the developmental disorder.

The Centers for Disease Control and Prevention (CDC) defines autism spectral disorders (ASD) as “a group of developmental disabilities that can cause significant social, communication and behavioral challenges.”

Children with autism spectral disorders can progress normally, then start losing skills or stop learning new ones. Other signs of ASD include delayed speech and language skills, flapping hands, or spinning in circles. Some toddlers won’t point at things or respond when their names are called.

CDC reported that 1 in 88 children were diagnosed with autism in 2008. According to a CDC study, 1 in 98 Black children were diagnosed with ASD compared to 1 in 83 White children. Between 2002 and 2008, Black children experienced a 91 percent increase in ASD diagnoses, compared to a 70 percent increase in ASD diagnoses for White children

Researchers found that the increased rate of ASD diagnoses in children was in part related to increased awareness and changes in how ASDs are identified. Although the CDC found that more children are getting diagnosed before they reach 4 years of age, most are still diagnosed between 4 years of age and 5. Researchers have found that minority children are often diagnosed much later.

Marty was diagnosed at 2 years-old, but most Black children lag behind their peers when it comes to early intervention for ASDs.

Cultural differences can also have an impact on when and if minorities get the right treatment.

“There’s a hesitation in our community to talk openly about mental health issues and developmental disabilities and autism was no different,” said Martin.

“In some families there is a hierarchy of the decision-making. The grandmother of the child insists that the child is fine or the father insists that the child is fine,” said Rebecca Landa, director of the Center for Autism and Related Disorders at Kennedy Krieger Institute in Baltimore. “The mother in those situations is in a bit more of a complex family situation, politically, where she may be viewed as disrespectful if she says ‘I really do think something is wrong here.’”

Blacks and low-income families often lack access to adequate healthcare, which could delay an autism diagnosis. When Black children only see the doctor when they get sick, it’s harder for a physician to track a child’s progress.

Landa co-authored a 2012 paper, titled “Differences in Autism Symptoms Between Minority and Non-Minority Toddlers,” based on her research. The paper reported that:

  • “When minority children eventually diagnosed with ASD see health-care professionals, they are more likely to receive a diagnosis other than autism.”
  • Black children who presented with signs of ASD, “were usually diagnosed with ADHD, conduct disorder, or adjustment disorder on their first specialty health-care visit.”

Alycia Halladay, senior director of environmental and clinical sciences for Autism Speaks, an autism science and advocacy group, said that children with autism from minority communities aren’t being recognized quickly enough.

“If these groups were traditionally underserved and not able to receive the same level of healthcare or awareness services that other people had, we felt like it was an obligation to ensure that there was equal access,” said Halladay.

Autism Speaks recently launched an advertising campaign, in an effort to increase awareness of autism in minority communities. Working with the Ad Council, Autism Speaks distributed advertising program kits and PSAs to more than 30,000 media outlets. Billboards and bus shelters featuring African American and Hispanic images and autism messages were also distributed nationwide. The ads and PSAs will run in donated space, so the advocacy group has almost zero control over when and where the ads will run or if they will run at all. According to the group, a similar campaign geared towards a general audience was successful with increasing awareness about autism.

Martin said that she’s glad to see that Autism Speaks launched the campaign for minorities, but she wonders if the ads will hit their target.

Shortly after her son’s diagnosis, Martin discovered a lack of access to resources and education for children and parents living with autism tailored to fit the needs of low-income and minority communities. In 2005, she founded the Special Needs Network to fill that void.

“I work at a grassroots level and reaching our community is a lot of work,” said Martin. “Where we get our news and where we get our information is often very different and a lot of times organizations miss the mark.”

Martin continued: “Are those ads going to be in Black newspapers that are handed out in Black churches or on radio stations in Black markets? Are the ads going to come on while people are watching ‘Love and Hip Hop Atlanta?’”

An ad running in the mainstream media on a major network at a certain time of day just isn’t going to reach Black and Latino families, said Martin.

“What we need to do now is empower parents to be their child’s advocate to let them know where to go for information and how to find the navigators in their community,” said Landa.

As one of those navigators, Martin knows that autism awareness often competes with myriad issues affecting poor and minority families.

“Autism is only one issue. When you’re serving low-income and underserved communities they’re dealing with transportation, housing, employment so, many other issues,” said Martin. “Autism just becomes one of a lot of issues that a family is dealing with. It has to be a very coordinated strategy to reach that family and get to that child.”

Martin continued: “For many parents, when they get the diagnosis they feel that in some ways it’s a death sentence. It’s not, there’s hope.”

Former Gov. Roy Barnes Defends Civil Rights Leader Accused of Fraud, Tax Evasion

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By D. Aileen Dodd
Special to the NNPA from The Atlanta Voice

Former Gov. Roy Barnes stresses that state Rep. Tyrone Brooks, a civil rights hero, is no thief and has been wrongly accused of fraud and tax evasion in a federal case that should have never been filed.”

Brooks has pleaded not guilty to federal charges stemming from allegations that he spent nearly $1 million in contributions donors made to Universal Humanities to fight illiteracy and the Georgia Association of Black Elected Officials. A federal indictment accuses Brooks of using donations to cover personal expenses from lawn care to credit card bills. ”

At a press conference held at his downtown Marietta law firm, Barnes called the charges against his client “outlandish” and gave an impassioned plea for Brooks citing his record of fighting for civil rights along side Martin Luther King Jr. and Joseph Lowery. Barnes said that Brooks often worked full-time for grassroots organizations without drawing a salary.”

“His life has been about serving, not about amassing great wealth,” Barnes said. “If his life has been about wealth, he could afford to pay me.””

Brooks stood quietly, holding his grandson, as Barnes discussed the case. The civil rights leader was flanked by more than a dozen supporters including clergy and community activists.”

The charges against Brooks have not slowed him down. Brooks said he had plans to protest outside of a grocery store that was serving spoiled food to customers in a mostly minority community. ”

“I am going to a picket line,” Brooks said.”

Brooks has been a civil rights activist since the 1960s. He was elected to the state Legislature in 1980 as the representative from Fulton and Douglas counties. He also was named president of the Georgia Association of Black Elected Officials, one of the group’s he stands accused of stealing from.”

The federal indictment against him examines a 20-year period alleging that Brooks spent about $40,000 to $50,000-a-year on himself. ”

“What he should have done was set up a salary for his full-time work, a very modest salary,” Barnes said. “If he had done that we would not be here today. Instead he was paid an amount approximating his expenses for his work and somehow that is a crime?””

If anything at all, Barnes said, Brooks may be guilty of, “bad book keeping” on how he tracked his reimbursements. Barnes added that the issue could be handled in a civil court, not a criminal one. ”

“We have all seen politicians who have manipulated the system for their personal benefit, but that is apparently not a crime of substance, while a civil rights protester who is given money to pay expenses when he works full-time in the struggle is a crime,” said Barnes. “Whether a person is guilty of a crime or not should not depend on who hires the best accountant or who holds the highest office.”

FBI Special Agent in Charge, Mark F. Giuliano has said that the probe into Brooks has merit. He maintained in a statement earlier: “Mr. Brooks exploited two charitable organizations for his own personal financial gain which came at the expense of the intended beneficiaries of the charitable donations. IRS Criminal Investigation is committed to investigating individuals who use charitable organizations for their personal gain.

With Five Years at the NAACP, Ben Jealous Strikes a Distinct Tone

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Benjamin Todd Jealous has charted a course focused on voting rights, capital punishment and marriage equality.

By Jonathan P. Hicks
Special to the NNPA from the San Diego Voice & Viewpoint

It has been five years since Benjamin Todd Jealous became president and chief executive of the NAACP and, in that time, he has ushered in a new era in the nation’s oldest and most prestigious civil rights organization.

Since coming to the position in May 2008, Jealous, 40, the youngest person to head the NAACP, has been an outspoken critic of the New York Police Department’s stop-and-frisk program. He has also been a strong presence in the media for defending President Obama’s Affordable Care Act, which overhauled the nation’s health care system.

What’s more, when Troy Anthony Davis was executed in Georgia in September 2011 for allegedly killing of a police officer in 1989, Jealous was one of the strongest voices in support of Davis and against the death penalty.

During the 2012 presidential election, he was a champion in the fight against the rash of voter identification laws passed by Republican legislatures. It is this in which he takes the most pride.

“We worked on the right to vote,” Jealous said, in an interview with BET.com. “We rose to the challenge of defeating voter suppression efforts in at least 15 states and registering in 433,951 new voters, almost four times as many as we did in 2008. And we were able to do that despite the situation in places like Florida, where voter registration was made more difficult.”

Despite the successes with voter laws around the country, Jealous’ most controversial act at the helm of the NAACP was leading the organization’s call for making same-sex marriage legal. The organization took a good deal of heat from member chapters as well as the African-American public for its position.

“We decided that it was time for the association to stand up nationally, that no longer could this be about the personal opinion of myself or anyone else,” Jealous said.

“We faced real push back from a number of leaders,” he explained. “But I give them credit that, even when they disagreed with us, they chose to embrace it as a distinction, not a division. Rather than breaking with the NAACP or President Obama, they decided it would be a matter of having difference of perspective and that they wouldn’t let it be an issue that would divide is.”

Jealous was born in Pacific Grove, California, and grew up in Monterey. He holds a bachelor’s degree in political science from Columbia University and a master’s degree in comparative social research from Oxford University, where he was a Rhodes Scholar.

He is, by his own admission, a product of the civil rights movement with struggle for equality part of his DNA.

His mother, who descends from two Black Reconstruction statesmen, was a member of the student body with a handful of Black girls who desegregated Western High School in Baltimore in 1954. His father, a decendant of the soldiers who fought at Bunker Hill during the Revolutionary War, was active in lunch-counter sit-ins and was arrested in several protests.

But his roots in the movement go far deeper. His ancestors included men who were born slaves and died having served as Reconstruction statesmen in Virginia’s House of Delegates and Senate.

“I was born into civil rights activism,” Jealous said. “My parents were activists who instilled it into me.”

Prior to his appointment to lead the NAACP, he was president of the Rosenberg Foundation, a private independent nonprofit venture capital organization. Before that, he served as director of the United States Human Rights Program at Amnesty International.

The most difficult aspect of leading the NAACP, Jealous said, is the time commitment, which has him away from home at least half the year.

“As Ben Hooks said, this job is a killing job,” Jealous said, referring to his predecessor, Benjamin Hooks. “It’s unrelenting and all-encompassing. The hardest part for me and for my family as a father is that you have to be everywhere all at once.”

But, he added, “I get to work with some of the most phenomenal volunteers in the entire country and, no matter how tough my job is, I know they are working just as hard and they don’t get paid for it.

Head of Black Mayors Group Urges Accountability

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By George E. Curry
NNPA Editor-in-Chief

ATLANTA (NNPA) – Sacramento, Calif. Mayor Kevin Johnson, the newly-elected president of the National Conference of Black Mayors (NCBM), told his colleagues that if they don’t improve the lives of their constituents, they don’t deserve to remain in office.

“We got these good seats, we’ve been elected and we get honored and esteemed everywhere we go,” Johnson said at a luncheon here at the group’s 39th annual convention. “It’s not just for us. It’s for the communities that we represent. Our obligation is to bring more and more people along. Because if we don’t do that, then we’re not fit for the seats that we hold.”

Johnson, a former star NBA point guard for the Phoenix Suns, cited the enormous growth of the mayors’ group. He noted that the NCBM began as a small, Southern organization in 1974 and now is a national force with nearly 700 mayors in the U.S., representing 48 million people or 15 percent of the U.S. population.

In recent years, it has expanded its international reach and now has more than 26,000 mayors on its roll, including many from Nigeria, Senegal, Uganda, Columbia and throughout the Caribbean.

“In terms of [population served], we’re bigger than Spain, Canada and Australia,” Johnson said. “Think about that. If we come together in numbers, we have that type of strength as an organization to do some remarkable things.”

He continued, “The question we all have to ask ourselves is this: As African-American mayors, are our cities better off because we’re elected? Are the people we represent better off because we hold the seats that we hold?”

In too many cases, Johnson said, the answer is no.

“Any category that’s bad, Black folks are at the top,” Johnson said. “Any category that’s good, Blacks folks, we’re at the bottom. That’s hard to do. We have somehow managed to do that.

“If you think about obesity, which is bad, we’re at the top. If you’re talking about unemployment, which is not good for us, we’re at the top. If you’re talking about dropping out, we’re at the top. If you’re talking about teenage pregnancy, we’re at the top. If you’re talking about being a renter instead of a homeowner, we’re at the top. Come on now.”

Because mayors work so closely to people, they are in position to bring about some fundamental change.

“We’re where the rubber meets the road,” Johnson explained. “Don’t expect Washington to solve our problems. That’s what this organization is all about.”

He said, “I’m just saying to us today, we have an opportunity to do something really special. And it’s not only about talk, it’s about us holding ourselves up and banding together as one unit and making sure our voices are heard, that we have a seat at the table

“We don’t just want a seat at the table, we want more than one seat at the table. And when you’re at the table, we need to be able to make decisions at the table and give some solutions and problem-solving ideas.”

Johnson was passionate as he discussed the future of the organization.

“The National Conference of Black Mayors – that name needs to mean something,” Johnson stated. “Every decision that we make going forward needs to be in the best interest of this organization. It’s not about one individual, it’s not about our cities, it’s not about any staff or mayor. It’s about what’s in the best interest of this organization. And that’s the commitment we’re all making here.”

He also said, “There are many people who counted us out. They said over and over, this organization can’t last. And we’re standing here after 39 years and the best days are ahead.”

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