A Mother's Mission, A Son's Strength: Fighting for Sickle Cell Warriors

As Executive Director of Sickle Cell Warriors of Buffalo, Melaney Agahiu’s mission is to educate and advocate for Sickle Cell Warriors across the community.

“Unfortunately, a lot of people turn a blind eye when they, unless it hits home. It’s easy to just ignore. I challenge people to learn about sickle cell and how it impacts people, and how they can help.”

For Melaney, that challenge is especially personal. Her son, 18-year-old Drew Agahiu, is a warrior himself.

“Initially, I was coming into Sickle Cell Warriors of Buffalo for support. Then it turned into a lot of volunteering. Sometimes it’s just being able to talk to someone who just gets it.”

Sickle cell disease is the most common genetic blood disorder in the United States, and it’s estimated that more than 100,000 people have sickle cell nationwide. Sickle cell disease distorts soft, round blood cells, turning them hard and crescent-shaped, which can lead to severe pain, tissue and organ failure, anemia, infections and strokes.

Throughout their journey, Drew and Melaney have been fortunate to be surrounded by a large community of supporters each making an impact, from family, friends, their Sickle Cell Warriors of Buffalo family – and a community of strangers nationwide.

“It means a lot to me,” Drew explained. “I feel like blood donors give a lot of support to me. Actually, they give 100 percent support to me. It’s hard to put into words.”

For warriors like Drew, regular blood and platelet transfusions are critical to managing extreme pain and life-threatening complications caused by sickle cell. After receiving multiple transfusions over the course of his treatment, Drew began receiving monthly apheresis transfusions two years ago.

“If it weren’t for people donating blood, Drew would probably be in a much worse condition,” Melaney said. “Before that, it was 6 or 7 hospital admissions a year. You know, it would be maybe 5 days to, you know, 6 to 8 weeks that he would be in the hospital, and that would include a handful of ICU admissions. Now, he probably has one hospital admission a year, maybe. It’s a blessing. He still obviously experiences pain and has crises, but oftentimes we can manage it at home, and I know for a fact that’s because of the transfusions.”

Noting her son’s extra energy as a result, Drew was quick to agree with a smile. 

“Now that we’ve been doing it once a month, that’s been a big change for me and it’s helping with my pain.”

That’s why Melaney says her work challenging the public to educate themselves on sickle cell is doubly important.  

Transfusions rely heavily on donors who carry CEK-negative antigens, which provides the best blood match and helps alleviate symptoms for those fighting sickle cell. Blood donors who are African American are nearly three times more likely to be CEK-negative than donors of a different race or ethnicity.

“Why is it important for people to donate blood?” Melaney asked. “It’s because it saved his life and other Sickle Cell Warriors. I can speak firsthand. I see the night and day.”

Drew agreed, “Don’t be afraid. You’re the biggest help to sickle cell warriors. Your support helps me to be there to hang out with friends or enjoy special moments.”

As our nation observes Juneteenth and World Sickle Cell Day on Friday, June 19, the Red Cross is honoring sickle cell warriors like Drew, the light they carry and the community of blood donors who surround them.

Every donation helps patients continue to thrive. The Red Cross encourages eligible donors of all backgrounds to make an appointment to give blood and help ensure patients with sickle cell disease have access to the lifesaving transfusions they need.

Those who come to give blood June 1-28, 2026, will receive a $15 e-gift card to a merchant of choice and be automatically entered for a chance to win one of two $7,500 gift cards.

Make an appointment to donate by visiting RedCrossBlood.org, calling 1-800-RED CROSS or using the Red Cross Blood Donor App.

Written by: Meg Rossman, American Red Cross of WNY

"It was a chain-reaction:" How blood donation led a local health care advocate to support Sickle Cell warriors in need

From a young age, Jasmine Westbrook understood the importance of blood donation.

“The first time I was introduced to donating blood I was in high school. We had a drive, but you know, when you’re in high school, you don’t have the best diet – especially breakfast. You’re not eating right, so a majority of us, myself included, couldn’t donate,” she laughed. “I initially donated blood about 10 years ago in college during a drive and I was a little bit more educated on having a balanced meal the night before and before the donation.”

She credits her mother, a longtime blood donor herself, for inspiring her to set a routine early on in life.

“We just want to do good,” Westbook explains. “In the last five years, I’ve started donating regularly once I really understood what my blood donation could do. How it could really impact somebody. I was doing it because I knew it would help people.”

But it was after Westbrook attended a panel discussion on Sickle Cell Disease co-hosted by Sickle Cell Warriors of Buffalo, the American Red Cross of Western New York and community partners that she began to look at her role as a blood donor in a new light.

“I attended and I really learned about the CEK-negative component.”

There are an estimated 100,000 people suffering from the effects of Sickle Cell disease in the United States. From pain to organ failure, patients with Sickle Cell often face serious medical complications due to an inherited gene that creates sickle-shaped red blood cells, causing difficulty in navigating through small blood vessels. As a result, blood transfusions are vital to treatment, with some patients requiring approximately 100 transfusions per year.

Transfusions rely heavily on donors who carry CEK-negative antigens, which provides the best blood match and helps alleviate symptoms for those fighting Sickle Cell. Blood donors who are African American are nearly three times more likely to be CEK-negative than donors of a different race or ethnicity.

To help increase the availability of close-matching blood for Sickle Cell patients, the American Red Cross launched the Sickle Cell Initiative in 2021. Since the launch, more than 125,000 first-time African American donors have rolled up a sleeve to help strengthen and diversify the blood supply. And as part of that initiative, more than 260,000 Sickle Cell trait screenings have been provided to donors.

“I left that event and wanted to know if I had that protein, because people talk about blood types, but they don’t always talk about that,” Westbrook says. “That day, I donated double reds, they tested it, and I got the card was told I was CEK-negative.”

Since then, Westbrook’s personal and professional motivations to encourage others to roll up a sleeve have taken on new meaning. A health care advocate with the Healthcare Education Project, Westbrook works directly with patients and the public through community events and uses the opportunity to inspire and educate others to donate not only for themselves but patients – especially Sickle Cell Warriors in need.

“I feel like it’s my duty because I have a protein in my blood that allows me to really help people and specifically in the African American community. A lot of the work that I do is coming back to my cultural group and knowing that I have the protein in my blood – that will really help people with sickle cell, which is an illness that is high in our community. Of course, I’ll share my blood. A big part of my role is advocacy on a statewide level for access to health care. I’m able to share information with people to help keep our community more educated, like with Sickle Cell. When the conversation comes up now, I’m equipped with information to say, ‘Why don’t you donate and see if you have that protein?’ I’m helping to pass the word around so we can have a healthier community. So, it’s personal for me and its business.”

You can learn more and help give to patients in need by making an appointment to donate at RedCrossBlood.org, by calling 1-800 RED CROSS (1-800-733-2767) or by downloading the free Red Cross Blood Donor app to your smartphone.

Meg Rossman, Regional Communications Manager, American Red Cross of Western New York

Turning compassion into action to help fellow Sickle Cell Warriors

Passion, Passion, Passion!

Jason Moore exudes passion as he talks about Sickle Cell Warriors of Buffalo.

The vice president of the non-profit explains that “Sickle Cell Disease is the most commonly inherited disease in the world.”

Red blood cells carry oxygen throughout the body; in Sickle Cell Disease, the red blood cells are mutated into a crescent or sickle-shaped form, and therefore cannot carry enough oxygen to the tissues and organs of the body – potentially leading to anemia, and tissue and organ damage. This often requires regular blood transfusions to manage extreme pain and life-threatening complications.

Jason explained that having Sickle Cell disease is a lonely life. Each patient presents with different symptoms, requiring treatment to be adjusted accordingly. Jason is happy to have wonderful providers in Buffalo to manage his care.

Jason and and his colleague, Sickle Cell Warriors of Buffalo president Juanita McClain experienced their journey side-by-side while undergoing treatments at Children’s Hospital, and at specialized camps for children living with Sickle Cell. Their care when they were younger was overseen by social workers. When they “aged out” around 21 years of age, there was no one to guide their care. They came to realize how helpful their social workers were and how much they did for them. Thus, the idea for Sickle Cell Warriors of Buffalo was born.

Sickle Cell Warriors of Buffalo programs include Education to the Community, Transitions – a program to assist teens and parents in moving into adult medical care, Care Coordination – assisting adults in finding qualified practitioners, and Support Groups for Warriors and their families.

On Jason’s good days, he states that he accomplishes so much. He’s a Community Health Worker assisting others along their journey, while guiding the Transitions participants. But on other days, he is in pain and exhausted. However, he appreciates what goodness will come about and knows there is a light at the end of the tunnel.  Optimistic and passionate!

This Sickle Cell Awareness Month and year-round, you can help support Jason’s work and Sickle Cell patients just like him in your community, by making an appointment to roll up a sleeve and donate lifesaving blood. Visit RedCrossBlood.org, call 1-800-REDCROSS or download the free RedCross Blood Donor app to make an appointment nearest you.

 Written by: Ginny Scott, American Red Cross of WNY Communications Volunteer

"Much more than living with Sickle Cell": How a Buffalo teacher's healing journey is helping to heal others

Juanita McClain is many things: a mother, educator, friend, author and a warrior – in every sense of the word.

“I was diagnosed early on. At just a few months old I had my first crisis,” she explained. “I spent a lot of time in the hospital growing up. I went through a lot of the complications. Until my late 20’s, I struggled really bad.”

Sickle Cell disease is the most common genetic blood disorder in the United States, impacting an estimated 100,000 people – most of whom are of African descent. It distorts soft and round red blood cells and turns them hard and crescent-shaped. As a result, blood has difficulty flowing smoothly and carrying oxygen to the rest of the body, which can lead to severe pain, tissue and organ damage, anemia and even strokes. Patients may require as many as 100 units of blood per year to manage extreme pain and life-threatening complications.

McClain estimates that until her early 20’s she was in the hospital receiving treatment for Sickle Cell disease at least once or twice a month, every month. In that time, she received multiple blood transfusions, had surgery to remove her gallbladder and suffered the devastating loss of her son during childbirth in the midst of a difficult Sickle Cell crisis. Despite all that, McClain is quick to point out that her diagnosis does not define her.

Instead, it’s all she’s been able to selflessly accomplish in the face of it.

“I was in college, and I was sick and missing school all the time. I started researching more about Sickle Cell and journaling about how I’d like to change my life,” she explains. “And I said I want to share my story with the world, so I wrote Living with and Surviving Sickle Cell Disease. I feel like it’s an autobiography of my life. After the book came out, I felt a relief over my life and things started to look brighter, so I kept going with it.”

McClain is now the proud author of three books on Sickle Cell disease, including a children’s book titled The Monster Within Me: Surviving Sickle Cell Disease; an educational story that serves as both a way for children to learn about Sickle Cell and to inspire them to achieve their dreams.

It was during this time that McClain, armed with the knowledge of the disease and her own triggers, began her advocacy work in the community. In that time, McClain has worked tirelessly to educate the community and her students at Burgard High School in Buffalo on the impact of Sickle Cell and blood donation; and helped to organize blood drives with the Red Cross ofWestern New York where she also serves on the Red Cross Biomed Committee. In 2018, McClain also launched a Sickle Cell warriors support group which has since grown into the non-profit Sickle Cell Warriors of Buffalo.

“It opens up doors for Sickle Cell warriors who have to get those frequent blood transfusions to be able to get the blood type they need, of their own blood type or race,” she explained. “My background and experience with the disease, I used those to help me grow as a person and to help me get healthier and live with the disease. And when that sparked, it made me want to do more to help others do a turn around in life and look at the disease in a different manner and want to be more than just living with Sickle Cell disease. And here we are today, and we’re doing so much!”

This fall, McClain’s students will help her to organize two blood drives with the Red Cross of Western New York as she also plans a number of community events with Sickle Cell Warriors of Buffalo, including a walk for Sickle Cell awareness, now in its fifth year, and a holiday event to help support local families impacted by Sickle Cell.

As for the mother of three and her own battle, she has this to say of her journey: “I feel the best that I’ve ever felt in my life these days. Things have improved drastically.”

Sickle Cell Warrior Uses Voice To Advocate For Fellow Patients

Sickle Cell Warrior Uses Voice To Advocate For Fellow Patients

“I use the word warrior a lot when I talk about people who battle with sickle cell disease and their families because a lot of times it is a battle.”

It’s a battle 33-year-old Stephanie Ramos knows all too well. It’s one she’s been fighting since birth.

“I was born with Sickle Cell disease. I have a twin brother who has the Sickle Cell trait.”

From roughly six months of age that meant episodes or “crises” as Ramos describes it, each time requiring lifesaving blood transfusions to alleviate what she recalls as tortuous pain.

“If you asked any Sickle Cell warrior, they would tell you it feels like being stabbed. It feels like being hit with a bat. Every second, every minute, every hour that it’s not being treated or taken care of.”

Sickle Cell disease is the most common genetic blood disorder in the United States, impacting an estimated 100,000 people, most of whom are of African descent. The disease distorts soft and round red blood cells and turns them crescent shaped. As a result, blood has difficulty flowing smoothly and carrying oxygen to the rest of the body, which can lead to severe pain, tissue and organ damage, anemia and even stroke.

“It causes a decaying effect in that particular part of the body,” Ramos explains. “It’s not getting the proper oxygen it needs so it starts to die and that’s what we call an episode. It’s pain and a lot of times it causes hospitalization and then most importantly, that leads to a blood transfusion.”

Ramos estimates that she received at least two blood transfusions per year from birth to age 25. In some cases, patients may require as many as 100 units of blood per patient per year to combat the painful effects.

“I always had to take a pack or two of blood. It’s a scary thing. Receiving life from someone I don’t even know. When you donate, you’re donating to someone like me who is in need and it’s needed more than ever.”

Like so many battling Sickle Cell disease, Ramos knows that frequent blood transfusions can make

finding compatible blood types much more difficult and that most often, donations from Black and Brown donors are the most compatible blood types for treatment.

Because of that, Ramos says she was forced to find her advocacy voice – for herself and now others, at a very young age.

“They pump new blood into us. Literally,” she explains. “So, when I tell people about donating blood, I tell them you are literally giving life again to someone whose life is fading away. When I speak to individuals from my background, from my Black and Brown communities, I say we scream that all lives matter – well, this is the start. If my life matters and yours does as well this is the start to show how much we matter to each other, by donating.”

In remission since a bone marrow transplant eight years ago, Ramos is now using her voice to help her fellow warriors through Sickle Cell Advocates of Rochester, or S.C.A.R. The group works to support patients and families affected by Sickle Cell in the Rochester area, hosting educational and social events, fundraising and much more.

“I use my voice because it’s all I’ve ever had. This is part of our toolbox. I’m lucky to be a person who walks in faith and since I can’t donate, let me be a person who can use my words to help bring others to donate and serve as an advocate.”

Part of Ramos’ own toolbox is hosting blood drives through S.C.A.R. and regularly encouraging others in the community to donate. While she recognizes a fear associated with donating, she has this to say on behalf of her fellow warriors.

“We have to watch out for our communities, because if we’re not looking out for ourselves, who is? If fear is the reason you don’t want to donate, then volunteer. Help us out and maybe you’ll learn it’s not a scary thing. And know that for two seconds of being scared, you just gave someone another two seconds of life back.”

One in three African American blood donors are a match for people with Sickle Cell disease. To help ensure patients have the lifesaving blood products they need, the American Red Cross of Western New York works with partners like S.C.A.R. to grow the number of compatible donors. You can help Sickle Cell warriors in the community by making an appointment to donate by visiting RedCrossBlood.org, calling 1-800-REDCROSS or downloading the FREE Blood Donor App on your smartphone.