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Pennsylvania Teen Raises Awareness in Honor of Her Father’s Fight with Leukemia

Rick Frazee with his daughter Julee

By Andres David Lopez

Rick Frazee is known for using different vehicles in his trucking company fleet to plow snow for his neighbors in Addison, Pa. This year, his fight with acute myeloid leukemia and two bouts of pneumonia have sidelined him.

“He would be up all day and night plowing,” said Julee, his daughter. “He would plow out the fire department, the little grocery store we have out here, the gas station … that’s been really hard on him right now, not being able to help everybody out.”

While helping to care for her father, Julee, 19, is also advocating for other families fighting blood cancers and blood illnesses. She volunteers as a digital ambassador with Be The Match and the Icla da Silva Foundation, two nonprofit organizations that help facilitate blood stem cell transplants.

A student at West Virginia University studying exercise physiology, Julee has raised awareness of the need for potential blood stem cell donors. So far, she has inspired 35 people to sign up. “Her efforts have made her a top advocate for Be The Match”, said Vanessa Ibarra, a community engagement specialist with the Icla da Silva Foundation.

“Introducing people to the importance of signing up as blood stem cell donors to help patients fighting blood cancers is difficult,” Ibarra said. “But Julee has been successful because she speaks from the heart about her father’s journey with leukemia. She talks about how Be The Match has given her family hope that he will beat it.”

Rick Frazee, 57, spent this summer in the hospital — at one point, he was isolated for 65 days away from his family — while undergoing chemotherapy for leukemia and treatment for pneumonia.

He is back home now. His wife and children help care for him while his doctors plan and prepare him for a lifesaving stem cell transplant.

After testing, doctors found that nobody in his family could serve as his donor. Thankfully, they found three perfect matches for him on the Be The Match Registry.

A blood stem cell transplant is the preferred course of treatment for many patients who are fighting blood cancers. Be The Match has helped facilitate more than 100,000 unrelated donor transplants since 1987. “The Icla da Silva Foundation is the largest recruitment center for Be The Match and specializes in fighting racial disparities in blood stem cell transplants”, says Ibarra.

More than 22 million Americans have registered with Be The Match as potential donors, but a match is not guaranteed for patients. Every year, thousands of patents across the country who need a transplant, lack a matching donor. That’s why constantly signing up new people between 18-44 as potential donors is so important.

Blood cancer patients of Caucasian descent only have a 77% chance of finding a matching donor on the Be The Match Registry. But Rick Frazee’s doctors have three perfect donor matches to choose from for his transplant.

“The doctors said they had never seen this many perfect matches this quickly,” Julee said. “And that was because of the Be The Match Registry.”

“Following in his footsteps”

Rick Frazee launched his trucking business in 1997 with one truck. Eventually, R.W. Frazee Trucking and Excavating grew to running 12 trucks as part of its fleet.

“For a small business in a small town that is pretty great,” Julee said. “We had excavating on the side. We had a wood processor. We were selling tons and tons of firewood. So, he’s a very smart businessman. He never went to college. He knew exactly what he wanted to do and he made his dream work for his family.”

The company has been downsizing since 2019 when Rick Frazee’s doctors told him he was in danger of developing leukemia.

Julee credits her mother for her strength in holding the family and company together.

“She is the one getting up at 5 a.m. every day, driving to the hospital and then the cancer clinic,” Julee said. “She is also staying up late doing the payroll, and invoices, and doing what she has to for the business…just trying to keep the family together. She is unbreakable.”

While Rick is currently fighting pneumonia, his wife Jamie is also responsible for making sure he receives his antibiotics, a process that can take as long as five hours.

“He has to get bags of saline,” Julee said, “bags of antibiotics, different kinds of flushes. And I’ve learned how to do all that, but my mom is still his main caregiver.”

“Fortunately, the family has felt love and support from their community”, Julee said. At a spaghetti dinner hosted to benefit her father, Julee spoke with many people who had received acts of kindness from him throughout the years. They wanted to know how they could give back.

“Owning a business, we’ve been very blessed over the years and he always wanted to help other people,” Julee said. “A large part of why I’m so passionate about health care and helping people is just from following in his footsteps.”

In May, Julee learned of the need for people to advocate for Be The Match. By sharing her family’s story, she hopes to inspire people to sign up as potential donors. She now has an answer for people who ask how they could help her father.

“You can support my family by signing up for Be The Match,” she says. “It’s free. It takes five minutes. And it’s easy.”

Through social media, Julee has reached thousands of people with her message and she has walked dozens through the process of signing up.

In November, doctors explained to the family that Rick Frazee was no longer responding to chemotherapy. This complicates his receiving the blood stem cell transplant that he needs. He is now receiving antibody therapy to continue fighting his cancer. And because his body is not producing enough blood or platelets, he travels three times a week to Uniontown Hospital for transfusions.

“That’s why he is so tired,” Julee said. “The cancer and the disease is so prominent in his body and his blood.”

Her father is dependent on weekly transfusions. This further underscores the importance for people to donate blood and platelets.

“I just never thought about how crucial it was,” Julee said. “It’s very needed for sure and I know because of COVID the American Red Cross is unable to reach out to people and is hurting for supplies.”

Julee’s goal in advocating for the Be The Match Registry is for at least 50 people to sign up as potential blood stem cell donors in honor of her father’s fight with leukemia.

“It has been over a year fighting this,” she said. “I just knew I wanted to get as many people on the registry as I could.”

To support Rick Frazee and his family in their campaign to add potential lifesaving donors to the Be The Match Registry, visit join.bethematch.org/fightforfrazee or text “FightForFrazee” (all one word) to 61474. Follow the link to register as a potential donor.

join tODAY – fight for frazee

After completing a swab kit, you will be added to the Be The Match Registry. Your odds of getting asked to donate blood stem cells are low, which is why Julee is working so hard to keep adding more potential donors to the registry.

Thank You Julee

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Jefferson Donated His Bone Marrow 10 years Ago

Jefferson Araujo donated his bone marrow 10 years ago.  He joined the registry through an Icla da Silva bone marrow drive in Boston, and after he donated, he met his recipient at the Icla da Silva Hope Gala in NYC.

He still supports the foundation by showing up at our  events and sharing his story.

Jeffersen gave someone’s life back. He insists “you can’t explain it…it’s a marvelous feeling.” He says he would do it again, 10,000 times. We are grateful he did it once.  Thank you Jeffersen, you are truly appreciated.

Rachell Souza was born with severe aplastic anemia. Her only chance to survive was a bone marrow transplant. Her family looked for a compatible donor for five years. Their search finished when Jefferson joined the Be The Match registry in Boston, at one of the Icla da Silva Foundation marrow drives.

Since both Jefferson and Rachell have Brazilian ancestry, Jeffersen was a match for Rachell.

Rachel and Jefferson met in NYC for the first time during our Hope Gala event in 2009.  She is now 18, they still keep in touch.

You can make a difference in someone’s life.  You could be someones match.

Please join the registry.

join the registry

 

 

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Why Do People Volunteer?

Have you ever considering volunteering your time.  Some people have a skill, or an experience that they wish to share.  Others are looking to gain an experience or learn about something new.  And many just want to give back, to feel that they contributed, assisted another person, or supported a particular mission or purpose.

At Icla da Silva, our mission is to save lives by recruiting bone marrow donors and provide support services to children and adults with leukemia and other diseases treatable by marrow transplants.  

We could not continue this mission without the support of our many volunteers.  We celebrate those who have the desire to give, learn, share and the dedication to contribute their time to our foundation.  We are grateful to the many students, survivors, patients, family members, and friends who put forth great effort to continue our mission.

Volunteers help us organize and activate more than 2500 bone marrow drives across the country every year.  They assist us in the development and activation of fundraising events, they act as committee members and they serve on our board.

We are thankful to every last one of them.

We recently asked some of our volunteers about why they work with us. Below you will find some of their stories.

If you wish to become a volunteer with us, please visit here to enter your information and we will contact you.


Peggy Rios – Miami, FL

I volunteer because I am amazed that I can be a small part of an effort that literally saves lives.  It is especially important to inform Hispanics about the importance of joining the registry so more of our Latino friends and loved ones who are struggling with bone marrow diseases can be saved.

I want people to know the realities of joining – how easy it is and how safe it is and most importantly how magnificent it is to be able to save someone’s life.

Many people don’t  join because they are afraid.  They know very little about the process and usually most of what they think is false.  They are unaware of how easy to can be to save a life and how worth it is. I hope that as more donors and recipients share their stories more people will join the registry.


Georgina Tiniakos – Chicago, IL 

I volunteer with Icla da Silva  because I want to spread more information about the benefits of donating bone marrow. It can save lives.

 

 

 

 

 


Sisters from Lambda Theta Alpha, Gamma Epsilon Chapter – Florida State University

We chose to volunteer for the Icla da Silva Foundation because we want to spread awareness to as many people as possible, in the hopes of one day saving someones life!

 

 

 


Lonnie Fowler – Orlando, FL

I first learned about the Icla da Silva Foundation from my wife who is a professor at Florida Technical College.  They were doing a donor drive on campus. The moment I found out what they do for people; I knew I had to help. I spoke at the school when they came to visit and that’s how I met Mauricio Murillo. I wanted to do my part and tell my story to help other people save lives.  

By joining the registry you can help save a life.  If it weren’t for organizations like the Icla da Silva Foundation, I wouldn’t be alive today to tell my story.  I am an AML leukemia survivor for over 20 years. You just fill out application, do the swabs and if you’re a match, you get a call to donate.

I believe the biggest challenge for people is knowing the procedure and seeing value on why they should make a donation.  There are also many myths out there regarding bone marrow donation. It’s a simple process, easy to register and also donate when a match is found.  

More stories of survivors need to be told.  It will inspire and motivate people to help save someone who is really in need. Statistics are also important on how a bone marrow transplant increases the odds of survival for those battling cancer.  My odds were a 5-10% chance to survive the transplant; imagine what my chances of surviving were without it. I wrote a book about my cancer survivor story and about my transplant. I’m in the process of doing a revamped version including more details of my story. (You can visit here to find out more about Lonnie’s book.)


Marta Mendez – Chicago, IL

Volunteering has always been a rewarding experience especially with the very kind hearted and hard working people I have met at Icla da Silva. I hope that our efforts in raising awareness of the donation registry has made a significant impact on people’s lives.

 

 


Natalia Mejia – Weston, FL

I volunteer because I like to help people regardless of their nationality, age, gender or condition. There is much need in everything related to cancer including education. Community unity is important.

There is a lack of information about how easy it can be to save a life through donation.  We must start by making people aware of what it means to register as a possible donor. Let each person understand that it can be the only opportunity save a patient with a blood disease.

Because people do not know the information, they have the wrong perception of what it means to be a bone marrow donor. They don’t even understand that the chances of being a donor are really low.

In December of 2017 my father was diagnosed with multiple myeloma. I am now fully aware that one of the treatments is a bone marrow transplant,  I am convinced of the need to educate people, especially those who do not register due to ignorance or lack of reliable information.


Love Your Melon – University of Central Florida

We work with the Love Your Melon Campus Crews at many different universities.  You can read more about our relationship here

The girls at the University of Central Florida insist that the bone marrow registry is so important, whether they sign up 5 people or 50 to the registry, it’s all making a difference, because it only takes one match to help save a life.


Dr. Nalliene Chavez Rivera – Roanoke, VA

I started volunteering for the foundation when I was in college. I was looking for a way to make a difference, develop my leadership skills and learn about topics that were related to medicine. When I joined the Icla team with Mauricio, and we began talking to others about bone marrow donation and blood cell donation; I realized the huge need there was for more information and understanding in regards to this topic. This motivated me even more to educate others and dispel myths around this issue. I also learned a lot about myself and what motivated me to pursue my medical career, seeing the profound effect that diseases can have in the human day to day life and condition.

As I was volunteering, I also realized the need to recruit as many people as possible, especially minorities. When I thought about it, minorities encompass such a small percentage of the registry that if anyone in my family ever got sick we would have a much lower chance of finding a life saving bone marrow match. Registering also does not mean you will get called to donate the next day but it does mean that you have the option of doing so, knowing that you will play a crucial part in a potential life saving intervention.

Sometimes the process is scary so I encourage everyone to get educated on the need and the process of bone marrow and blood cell donation and give someone else the gift of living a healthy life. I think media and movies have helped spread the idea that this process is painful and dangerous to those donating and getting the right information and garnish interest from others has been a challenge.  

Being in the medical field I have met many children and adults with bone cancer. I have seen first hand how devastating this diagnosis can be to the patient, and their families and close friends. I have seen the frustration from families and their pain as they try to do everything possible to save their loved ones life. This makes it very hard for me to understand why most people won’t sign up. Seeing these cases every day makes me want to teach others and encourage them to sign up to the registry and really give others the chance to live a full healthy life.


Thank you to our many volunteers.  Without you, we could not save as many lives or support as many patients in need!  If you wish to join us as a volunteer, please visit this link and enter your information so we can contact you. 

 

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