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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.
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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Trump as a Distraction…Focus on the Ballot and 2028
Don’t get lost in the noise of the headlines. Dr. Warren breaks down the long-term political landscape and how to stay focused on what truly matters for 2028.
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Multi-Faith Leaders Representing 10 Million People Launch National Anti-Authoritarian Initiative
Faith leaders pledge to build a national movement of moral resistance and act against weaponized religion
On October 26, in the first-of-its-kind religious movement, more than 30 faith leaders representing over 10 million people launched A Pledge for Moral Defiance, a multi-faith anti-authoritarian initiative. Before a pulpit in the middle of H St and 16th streets NW, within view of the White House, religious leaders vowed to turn the tide on the nation’s democratic erosion. Leaders across faiths and denominations, including Presbyterians, Baptists, Lutherans, Christian Church, AME Zion, Latino Christians, Buddhists, Hindus and Muslims called on others to join and take action in their states and to the U.S. Capitol.
Rooted in “An American Encyclical on Our Authoritarian Crisis,” the initiative calls on all religious leaders to actively reject authoritarianism and the weaponization of religion. Law firms and higher education institutions each banded together to defend themselves against direct attacks. Multi-faith religious leaders are now doing the same through prayer, protest, mobilization and accountability. They pledge to refuse allegiance to any political leader or ideology, name voter mobilization and protection as priorities and stand in solidarity to actively defend freedom of conscience.
Bishop William J. Barber II, civil rights and social justice leader and co-chair of the Poor People’s Campaign: A National Call For Moral Revival, noted the agreement across this movement of religious leaders that complicity to authoritarianism betrays all faiths.
“As people of faith, our ultimate allegiance belongs to a higher power, and our sacred text commands us to defend the vulnerable, and love our neighbors, and stand as a witness to truth,” Barber said. “We repent that sometimes we’ve been scared of the people in our pews rather than scared of the judgment of God, we repent, but we also recommit ourselves to the exhausting holy work of building a just society. It’s hard work when authoritarianism threatens to overwrite human rights, and silence conscience. The religious community cannot remain silent because if we do, we are accessories to the crime of everything authoritarianism is doing.”
The initiative emerged from a multi-faith convening of leaders to counter authoritarianism, hosted by the Charles F. Kettering Foundation, a group focused on fostering inclusive democracies. Movement leaders are organizing to grow the initiative, mobilizing communities for strong voter turnout and organizing to meet with elected officials.
Corey Saylor, Council on American-Islamic Relations research and advocacy director, declared authoritarianism a threat to all people and faiths. “Authoritarianism arrives in stages, almost always testing itself first on communities that they think others will not defend,” Saylor said. “…This same playbook is used against immigrants, against Black and Brown voters, against journalists, against any faith community whose conscience refuses to submit and do what they’re told. That playbook is putting corrupt wealth and your freedom into their pocket. Today, you must look authoritarianism in the eye and say no. The pledge of allegiance … ends with the words ‘with liberty and justice for all.’ It is time to prove that we meant it.”
Rev. Adam Russell Taylor, president of Sojourners, asserted we would not idly stand by in the face of voter suppression. “We are in the midst or on the eve of a midterm election that is an inflection moment in our commitment and our cause of preventing the continued slide into authoritarianism,” Taylor said. “Authoritarian leaders are known to try to put their thumbs on elections, to make desperate moves to stay in power and consolidate power. We have our moral defiance playbook that is committed to fighting every form of voter suppression, because every voter is made in the image and likeness of God. We have a commitment to winning, not in a partisan way, but in a way that ensures massive voter turnout…We have a commitment to prove beyond a doubt the election results, and ultimately to ensure those results are enforced, all the way through the seating of a new Congress on January 3rd.”
Rev. Dr. Russell Meyer, executive director for Florida Council of Churches, proclaimed it was time to lift up what a just government should be doing for its people. “We gather today not just to point a finger,” Meyer. “Finger pointing does no good unless it leads to repentance and amendment to life and change. We look across the land, whether in the house behind us or the house in Tallahassee for our state governor, and they are oppressing the poor and enriching those who steal their labor as a means of living. It’s time for us to understand that we are not just defying a bad government, we’re lifting up a vision of what government really should be doing.”
Prominent religious leaders at the launch included:
- The Rev. Phillip C. Hirsch is the bishop at the Metropolitan Washington D.C. Synod of the Evangelical Lutheran Church of America. Hirsch has spoken out about threats to American democracy and the recent danger facing immigrant communities across the country.
- Rev. Dr. Hanna Broome, director of religious affairs for Repairers of the Breach and ordained elder in the A.M.E. Zion Church. She’s led congregations and coalitions across the Carolinas to confront poverty, racism and the death penalty.
- Rev. Dr. Alvin O’Neal Jackson, retired pastor and former moderator of Christian Church (Disciples of Christ) who has led marches against Immigration and Customs Enforcement and joined other faith leaders in calling for voting rights.
- Rev. Adam Russell Taylor, president of Sojourners who has called on religious leaders to resist anti-democratic threats and defend democracy, including voting protections.
Learn more about A Pledge for Moral Defiance and see the full list of signatories at www.moraldefiance.org.
WATCH the announcement here:
BlackPressUSA
Multi-Faith Leaders Representing 10 Million People Launch National Anti-Authoritarian Initiative
Faith leaders pledge to build a national movement of moral resistance and act against weaponized religion
On October 26, in the first-of-its-kind religious movement, more than 30 faith leaders representing over 10 million people launched A Pledge for Moral Defiance, a multi-faith anti-authoritarian initiative. Before a pulpit in the middle of H St and 16th streets NW, within view of the White House, religious leaders vowed to turn the tide on the nation’s democratic erosion. Leaders across faiths and denominations, including Presbyterians, Baptists, Lutherans, Christian Church, AME Zion, Latino Christians, Buddhists, Hindus and Muslims called on others to join and take action in their states and to the U.S. Capitol.
Rooted in “An American Encyclical on Our Authoritarian Crisis,” the initiative calls on all religious leaders to actively reject authoritarianism and the weaponization of religion. Law firms and higher education institutions each banded together to defend themselves against direct attacks. Multi-faith religious leaders are now doing the same through prayer, protest, mobilization and accountability. They pledge to refuse allegiance to any political leader or ideology, name voter mobilization and protection as priorities and stand in solidarity to actively defend freedom of conscience.
Bishop William J. Barber II, civil rights and social justice leader, Founder of Repairers of the Breach and Founding Director of the Yale Center for Public Theology and Public Policy, noted the agreement across this movement of religious leaders that complicity to authoritarianism betrays all faiths.
“As people of faith, our ultimate allegiance belongs to a higher power, and our sacred text commands us to defend the vulnerable, and love our neighbors, and stand as a witness to truth,” Barber said. “We repent that sometimes we’ve been scared of the people in our pews rather than scared of the judgment of God, we repent, but we also recommit ourselves to the exhausting holy work of building a just society. It’s hard work when authoritarianism threatens to overwrite human rights, and silence conscience. The religious community cannot remain silent because if we do, we are accessories to the crime of everything authoritarianism is doing.”
The initiative emerged from a multi-faith convening of leaders to counter authoritarianism, hosted by the Charles F. Kettering Foundation, a group focused on fostering inclusive democracies. Movement leaders are organizing to grow the initiative, mobilizing communities for strong voter turnout and organizing to meet with elected officials.
Corey Saylor, Council on American-Islamic Relations research and advocacy director, declared authoritarianism a threat to all people and faiths. “Authoritarianism arrives in stages, almost always testing itself first on communities that they think others will not defend,” Saylor said. “…This same playbook is used against immigrants, against Black and Brown voters, against journalists, against any faith community whose conscience refuses to submit and do what they’re told. That playbook is putting corrupt wealth and your freedom into their pocket. Today, you must look authoritarianism in the eye and say no. The pledge of allegiance … ends with the words ‘with liberty and justice for all.’ It is time to prove that we meant it.”
Rev. Adam Russell Taylor, president of Sojourners, asserted we would not idly stand by in the face of voter suppression. “We are in the midst or on the eve of a midterm election that is an inflection moment in our commitment and our cause of preventing the continued slide into authoritarianism,” Taylor said. “Authoritarian leaders are known to try to put their thumbs on elections, to make desperate moves to stay in power and consolidate power. We have our moral defiance playbook that is committed to fighting every form of voter suppression, because every voter is made in the image and likeness of God. We have a commitment to winning, not in a partisan way, but in a way that ensures massive voter turnout…We have a commitment to prove beyond a doubt the election results, and ultimately to ensure those results are enforced, all the way through the seating of a new Congress on January 3rd.”
Rev. Dr. Russell Meyer, executive director for Florida Council of Churches, proclaimed it was time to lift up what a just government should be doing for its people. “We gather today not just to point a finger,” Meyer. “Finger pointing does no good unless it leads to repentance and amendment to life and change. We look across the land, whether in the house behind us or the house in Tallahassee for our state governor, and they are oppressing the poor and enriching those who steal their labor as a means of living. It’s time for us to understand that we are not just defying a bad government, we’re lifting up a vision of what government really should be doing.”
Prominent religious leaders at the launch included:
- The Rev. Phillip C. Hirsch is the bishop at the Metropolitan Washington D.C. Synod of the Evangelical Lutheran Church of America. Hirsch has spoken out about threats to American democracy and the recent danger facing immigrant communities across the country.
- Rev. Dr. Hanna Broome, director of religious affairs for Repairers of the Breach and ordained elder in the A.M.E. Zion Church. She’s led congregations and coalitions across the Carolinas to confront poverty, racism and the death penalty.
- Rev. Dr. Alvin O’Neal Jackson, retired pastor and former moderator of Christian Church (Disciples of Christ) who has led marches against Immigration and Customs Enforcement and joined other faith leaders in calling for voting rights.
- Rev. Adam Russell Taylor, president of Sojourners who has called on religious leaders to resist anti-democratic threats and defend democracy, including voting protections.
Learn more about A Pledge for Moral Defiance and see the full list of signatories at www.moraldefiance.org.
WATCH the announcement here:
Black Press
Former Trustee Alena Maunder Seeks Reelection to Sausalito Marin City School District Board
Alena Maunder, a third-generation Marin City resident and registered nurse with over 20 years of healthcare experience, is seeking reelection to the Sausalito Marin City School District Board. Having previously served as a trustee from 2020 to 2024, Maunder highlights her background in governance, fiscal oversight, and community advocacy as key qualifications for the role. Her platform focuses on academic excellence, mental health supports, and special education. She remains committed to fostering stronger relationships between families and educators to ensure student success. Read more about her campaign priorities.
Alena Maunder is a third-generation Marin City resident, parent, community advocate, and former Sausalito Marin City School District Trustee who served from 2020 to 2024.
Professionally, Alena is a registered nurse with more than 20 years of healthcare experience and nine years in leadership. She holds degrees in Psychology and Nursing, as well as a Master of Science in Nursing.
With school board experience, she brings a strong understanding of governance, fiscal oversight, accountability, and the importance of stable district leadership.
Alena has also remained actively involved in Marin City through community service, youth programs, and initiatives focused on strengthening opportunities and resources for children and families.
Maunder is seeking to return to the Board to continue advocating for academic excellence, fiscal responsibility, strong special education and mental-health supports, and meaningful community engagement. She is committed to strengthening relationships among students, educators, families, and the Marin City and Sausalito communities while ensuring every student has the opportunity to succeed.
Her campaign reflects her commitment to “Experienced Leadership. Students First.”
Learn more at www.electalenasmcsd.com.
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