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Martin Center celebrates 50 years of service to sickle cell patients

INDIANAPOLIS RECORDER — The Centers for Disease Control and Prevention (CDC) estimates that about 100,000 Americans have sickle cell disease. The disease occurs in one out of every 365 Black or African American births, and about 1 in 13 Black or African American babies is born with sickle cell trait, meaning the baby inherited the gene from one parent and likely won’t have any of the symptoms of sickle cell disease.

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The Martin Center Sickle Cell Initiative, 3545 N. College Ave., sits in what used to be a duplex. The center, which provides support for people who have sickle cell disease, is celebrating its 50th anniversary this year. (Photo by: Tyler Fenwick)

By Tyler Fenwick

Julie Daniels lucked out when her mother took her to the pediatrician when she all of the sudden couldn’t bear any weight as a 1-year-old, even after learning how to walk. The pediatrician was a hematologist and recognized the signs he saw. He tested Daniels, and sure enough, she was diagnosed with sickle cell disease.

Daniels has Hemoglobin SB+ (beta) thalassemia, to be exact. It’s one of the four main types of sickle cell disease. The disease affects hemoglobin, the protein in red blood cells that carries oxygen to different parts of the body. Symptoms can include anemia, repeated infections and chronic pain.

It’s the pain that has affected Daniels’ life the most. She stopped working in 2015 because the pain was so bad. She’s on disability now, but she said the pain seems to come more often. The worst days — when the pain becomes overpowering and she can’t do anything — can happen as often as three times a week.

Couple that with fatigue, and it’s like your body “just shuts down on you,” Daniels said, and a nap isn’t going to make it any better.

Growing up in Fort Wayne, said she felt “very alone.” She had a cousin with the same disease, but he lived in Maryland. Daniels, who went to Purdue University and got her master’s degree in Indianapolis, started going to the Martin Center Sickle Cell Initiative in 2010. She had never heard of what was then a 41-year-old organization. There wasn’t anything like it around the state.

This year, the Martin Center is celebrating its 50th anniversary. That’s 50 years of supporting a community that for so long has been ignored and stigmatized. There will be a celebration with dinner, music and a silent auction at 6:30 p.m. Sept. 20 at the Willows on Westfield. Tickets are $75 at themartincenter.org.

Go back to 1969, when Father Boniface Hardin and Dr. Raymond Pierce founded the center, and it’s clear why this organization was needed.

“You would find that there really wasn’t much information at all and hardly any interest in sickle cell disease,” said Gary Gibson, president and CEO of the Martin Center, “because it was a disease that seems to affect only Black people, and people of color didn’t matter. It didn’t get the attention that it should get.”

The Centers for Disease Control and Prevention (CDC) estimates that about 100,000 Americans have sickle cell disease. The disease occurs in one out of every 365 Black or African American births, and about 1 in 13 Black or African American babies is born with sickle cell trait, meaning the baby inherited the gene from one parent and likely won’t have any of the symptoms of sickle cell disease.

Daniels knew her husband didn’t have the gene, so they could only pass along the trait to their daughter. Daniels said they talk with her about the possibility of having a partner who also has the trait and potentially passing the disease to her child. When both parents have the trait, there’s a 25% chance their child will have the disease, according to the CDC.

This is part of what the Martin Center has been doing: educating people who have the disease and trait. The organization has programs that not only teach patients about the disease, but also provide services and support such as a food pantry, support groups and financial assistance.

Frank Lloyd, a Martin Center board member and retired physician, understands why it’s important for African Americans to have this kind of intimate meeting space to talk about a disease that many others know so little about.

During his time at IU Health Methodist Hospital, Lloyd saw sickle cell patients whose pain was discounted by other physicians. It’s a well-documented phenomenon in medicine, where white doctors have false beliefs about biological differences between their white and Black patients, leading them to think their Black patients don’t feel as much pain.

The Martin Center is a place where patients can drop that guard and be with others who are also dealing with an invisible disease that doesn’t get as much attention — or funding — as other conditions that are less common.

Gibson, whose wife died from complications with sickle cell disease in 1989, said the next step for the Martin Center hopefully involves expanding. He would like to get up to Gary and Fort Wayne, places that need these kinds of services but don’t have them to the same scale.

He saw what sickle cell disease did to his wife and sees what it’s doing to patients now every day.

“It’s not fair,” Gibson said. “Those who have it didn’t ask for it, and they didn’t do anything to cause it. To me, that’s just not fair.”

Contact staff writer Tyler Fenwick at 317-762-7853. Follow him on Twitter @Ty_Fenwick.

This article originally appeared in The Indianapolis Recorder.

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Supreme Court Decision Confirms Convicted Felon Will Assume Presidency

NNPA NEWSWIRE — In a 5-4 ruling, the court stated that Trump’s concerns could “be addressed in the ordinary course on appeal” and emphasized that the burden of sentencing was “relatively insubstantial” given that Trump will not face prison time. Chief Justice John Roberts and Justice Amy Coney Barrett joined the court’s three liberal justices in the majority, with four conservative justices dissenting.

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By Stacy M. Brown, NNPA Newswire Senior National Correspondent
@StacyBrownMedia

The Supreme Court on Thursday rejected President-elect Donald Trump’s emergency request to block criminal proceedings in his New York hush money case, ensuring that a sentencing hearing will proceed as scheduled on Friday. The decision makes it official that, on January 20, for the first time in its history, the United States will inaugurate a convicted felon as its president.

In a 5-4 ruling, the court stated that Trump’s concerns could “be addressed in the ordinary course on appeal” and emphasized that the burden of sentencing was “relatively insubstantial” given that Trump will not face prison time. Chief Justice John Roberts and Justice Amy Coney Barrett joined the court’s three liberal justices in the majority, with four conservative justices dissenting.

Trump was convicted in May for falsifying business records related to a $130,000 payment to adult film star Stormy Daniels before the 2016 election. Manhattan District Attorney Alvin Bragg argued that the Supreme Court lacked jurisdiction to intervene in a state criminal case, particularly before all appeals in state courts were exhausted.

Trump’s legal team claimed the sentencing process would interfere with his transition to power and argued that evidence introduced during the trial included official actions protected under the Supreme Court’s prior ruling granting former presidents immunity for official conduct. Merchan, the New York judge who presided over the trial, ruled in December that the evidence presented was unrelated to Trump’s duties as president.

Prosecutors dismissed Trump’s objections, stating that the sentencing would take less than an hour and could be attended virtually. They said the public interest in proceeding to sentencing outweighed the President-elect’s claims of undue burden.

Justice Samuel Alito, one of the four dissenting justices, confirmed speaking to Trump by phone on Wednesday. Alito insisted the conversation did not involve the case, though the call drew criticism given his previous refusals to recuse himself from politically sensitive matters.

The sentencing hearing is set for Friday at 9:30 a.m. in Manhattan. As the nation moves closer to an unprecedented inauguration, questions about the implications of a convicted felon assuming the presidency remain.

“No one is above the law,” Bragg said.

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How Head Start Installs Confidence for Two Generations

NNPA NEWSWIRE — Head Start is a changemaker for all communities. Child by child, family by family, the seeds that are sowed continue to blossom as they stretch higher and higher toward the sunshine.

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By Olivia Harvey

The founders of Head Start have always viewed parents as critical partners in their work to educate young children. They also understood that this partnership meant parents should help decide which services would most benefit their families and those in the community. As a result, Head Start created a formal leadership and policymaking role for parents and community members called the Policy Council.

Thank you to Head Start parent, Policy Council member, and alumna Olivia Harvey for recently sharing her story.

A few years ago my daughter Maliya was six years old and had just started kindergarten, after graduating from the Children First Head Start program in Sarasota County, Florida. It was hard to believe we’d reached this major milestone, but with all the love, care, and guidance she received from her incredible teachers, I’m confident that she will continue to blossom and thrive. Children First and the Head Start program have always been close to my heart, and the hearts of my family. My husband Malik is also a proud Head Start graduate along with some members of his family. He’s a wonderful support system and understands our shared mission of raising the healthiest, happiest family possible. Our lives are centered around family, and in addition to Maliya, we also have two other children, our sons Jeremiah and King. When we had our kids, we knew we didn’t have to look far to find quality, affordable childcare with amazing teachers we could trust. With the challenges we were facing, we knew we could turn to Children First’s Head Start program to help us find our path to success.

My family has been involved with Children First since Jeremiah was a toddler. Our family advocate, Ernestine, was there for Maliya and our entire family every step of the way. I know that even when my daughter is in high school, Ernestine will be there in a heartbeat if we ever need anything. The teachers care so deeply about the kids, and they never forget their faces. One day, Maliya came home with a photo taken by her teacher, Miss LaTonda. It was a baby picture of me because Miss LaTonda had been my teacher as well. I couldn’t believe she had kept it for all these years! It was such a special memory to share with my daughter, and it’s moments like this that let me know we will always be a part of the Children First family. Through Head Start, I also found a lot of support personally and as a parent. Due to the pandemic, I had reduced hours and was forced to seek other employment. During this time, I needed something that would allow me to feel professional and help me keep my skills up while at the same time offering me the flexibility to be a mom.

Luckily, Children First was offering a Job Skills Training Course as part of the agency’s Family Strengthening services. The class was perfect because it provided a sense of accountability and belonging. I learned about identifying and overcoming obstacles related to employment, and there was a special focus on resume writing, interviews, and ‘acing’ the first 90 days at a new job, which has benefited me! After a mock interview with my vocational family advocate Laura and her colleagues, I felt so confident with the skills that I had learned, and I decided to reach a higher goal in the workforce. I was offered a position at Sarasota School of the Arts & Sciences, where I have been working as a paraprofessional. While working full-time, I’ve also had the opportunity to go back to school to earn my bachelor’s degree to become a history or math teacher. My ambitions have led me to be a working professional, a full-time mom, and now, a student, but I’m not stopping there. In the future, I would like to earn my master’s degree and work as an administrator, with one of my ultimate goals being to run for the school board.

Because of Children First, Head Start, and my vocational coach, Laura, it feels like a whole new world of possibilities has opened. While I was unexpectedly unemployed but fighting to stay engaged, I was supported every step of the way. Laura and the team at Children First continue to guide me and my family on our journey to success. Although we still face unique challenges, I feel grateful and am so proud of how far we’ve come. Because Malik and I were able to grow and thrive in a healthy environment at the earliest stages of our lives, the lives of our children have been transformed for the better. Right now, some parents, families, and caregivers are struggling financially and socially. They need lower childcare prices, full workday hours with childcare coverage, and free transportation to and from daycare.

Head Start is a changemaker for all communities. Child by child, family by family, the seeds that are sowed continue to blossom as they stretch higher and higher toward the sunshine. Their promise is simple: every child, regardless of circumstances at birth, can reach their full potential. As I look to the future — from my youngest child thriving, to earning my teaching degree, to raising my beautiful children alongside my husband and beyond that, I know that thanks to Head Start, there is nothing to fear.

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Cold Weather Safety for Children

NNPA NEWSWIRE — Keep babies’ cribs free of stuffed animals and blankets. A firm mattress covered with a tight-fitting crib sheet is all that an infant needs to sleep safely.

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By The Head Start Early Childhood Learning and Knowledge Center

Children are more vulnerable than adults to the effects of cold weather. The Head Start Early Childhood Learning and Knowledge Center developed these tips to help families and staff keep children safe, healthy, and warm in the winter.

Bundle up!

  • Children are at greater risk for frostbite than adults. The best way to prevent frostbite is to make sure children dress warmly and don’t spend too much time outside in extreme weather.
  • Dress children in layers of warm clothing. If the top layer gets wet, they will still have a dry layer underneath.
  • Tuck scarves inside coats and jackets to prevent them from becoming strangulation hazards.
  • Car seats and winter coats don’t mix. Bulky coats can compress in a crash and create a loose car seat harness. Instead, lay the jacket or a blanket over the children once you’ve safely strapped them into their car seat.

Keeping Healthy Outdoors

  • There’s no set amount of time for children to play outside safely when the weather is cold. Use your best judgment. When the cold becomes unpleasant, it’s time to go inside.
  • If you are unsure if weather conditions are safe for outdoor play, check the Child Care Weather Watch Chart.
    • Have children come indoors periodically to prevent hypothermia or frostbite. A temperature of 0 degrees Fahrenheit and a wind speed of 15 mph creates a wind chill temperature of -19 F. Under these conditions, frostbite can occur in just 30 minutes.
    • Frostnip is an early warning sign of frostbite. The skin may feel numb or tingly or appear red (on lighter skin).
    • To prevent frostbite, check that mittens and socks are dry and warm. Frostbite occurs mostly on fingers, toes, ears, noses, and cheeks. The affected area becomes very cold, firm, and, depending on the color of the skin, turns white, yellowish-gray, or gray.
    • Even though it’s cold outside, it’s important to use sunscreen and stay hydrated. Children are more likely than adults to become dehydrated.

Staying Safe Indoors and in Vehicles

  • Keep anything that can burn at least three feet away from heating equipment, including furnaces, fireplaces, wood stoves, and portable space heaters.
  • Set up a 3-foot “kid-free zone” around open fires and space heaters.
  • Remember to turn portable heaters off when leaving the room.
  • Test smoke alarms at least once a month.
  • Vent all fuel-burning equipment to the outside to avoid carbon monoxide (CO) poisoning.
  • Install and maintain CO alarms. Keep alarms at least 15 feet away from fuel-burning appliances.
  • If you need to warm up your vehicle, remove it from the garage as soon as you start it to avoid the risk of CO poisoning. Don’t leave a vehicle running inside a garage.
  • If vehicles are parked outside, check to make sure the tailpipe is not blocked with snow, which can also cause problems with CO.

Sleeping Safely in Any Season

  • Keep babies’ cribs free of stuffed animals and blankets. A firm mattress covered with a tight-fitting crib sheet is all that an infant needs to sleep safely.
  • If you are worried about keeping babies warm, dress them in a wearable blanket, also known as a sleep sack.

Infection Control

  • Cold weather does not cause colds or flu. However, viruses that cause a cold and the flu are more common in the winter when children spend more time indoors.
  • Keeping everyone’s hands clean is one of the most important ways to avoid getting sick and spreading germs to others. Wash hands with soap and clean running water and rub them together for at least 20 seconds.
  • Teach children to cough or sneeze into their upper sleeve or elbow, not their hands. Adults should model this behavior.
  • Review program policies on handwashing; cleaning, sanitizing, and disinfecting; and excluding children and caregivers who are sick.
  • The U.S. Centers for Disease Control and Prevention and the American Academy of Pediatrics recommend that all children 6 months and older receive the seasonal flu vaccine every year. All early care and education program staff should also get vaccinated for the flu.
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