Removing barriers so a little girl can receive her life-saving treatment.
Valery Hernandez is a 9-year-old girl from the Dominican Republic. She was diagnosed with acute lymphoblastic leukemia in 2019. After two years of chemotherapy at the Instituto de Oncologia in the Dominican Republic, her cancer finally went into remission.
But the leukemia was so aggressive that it returned after only five months.
While a bone marrow transplant was her only option, the hospital in DR does not perform pediatric bone marrow transplants.
The medical team there referred her to the Icla da Silva Foundation.
We helped identify a transplant center in the U.S., Nemours Children’s Health, for her bone marrow transplant. After reviewing her case, a study for CAR T-cell therapy was identified at the National Institute of Health (NIH).
A team of doctors were interested in Valery’s case for a clinical trial.
What is CAR T-Cell Therapy?
CAR T-cell therapy is a treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they attack cancer cells. T cells are taken from a patient’s blood. The gene for a special receptor, which binds to a specific protein on the patient’s cancer cells, is added to the T cells in the laboratory. This receptor is called a chimeric antigen receptor (CAR). A large number of these CAR T-cells are grown in the laboratory and given to the patient by infusion.
CAR T-cell therapies, and other antibody-based therapies, are used to target surface proteins found on leukemia cells. The goal is to improve outcomes for patients with blood cancers that do not respond to chemotherapy.
The family cried with joy after learning about the clinical trial.
CAR T-cell therapy, followed by a bone marrow transplant, was the best opportunity for long-term survival.
There were many barriers we helped remove in order to give Valery her chance at survival:
- Identify a Transplant Center in the U.S. for her bone marrow transplant
- Petition to get her accepted for the clinical trial at NIH in Bethesda, MD
- Support her application for a temporary humanitarian visa
- Arrange accommodations at NIH
- Arrange travel for the donor to transplant her blood stem cells
The first phase of the treatment, the CAR T-Cell therapy, was a success.
The Next Phase
Valery is doing great! She has been transferred to Nemours Children’s Health for her bone marrow transplant, which will happen in a few weeks.
The Foundation assisted with the arrival of her donor, Valery’s younger sister.
She is a perfect match.
We have been in constant contact with the family and continue to support them with logistical and emotional needs on their journey to a cure.
We are grateful for the amazing medical teams that are caring for Valery and her family.
Please consider making a donation and help us remove barriers for more patients like Valery.
MAKE A DONATION
Written by: Bret ItskowitchAnother Barrier Removed When No One Else Could Help
The Icla da Silva Foundation goes the ‘extra mile’ to ensure that another life is saved.
Young Herzel was inspired to become a nurse after surviving thyroid cancer in 2017. The remarkable care that she received as a patient impacted her greatly, and she enrolled in nursing school with a desire to help others.
But while preparing for her exam to become a Certified Dialysis Nurse, Herzel was diagnosed with Acute Myeloid Leukemia (AML).
A bone marrow transplant was her only chance for a cure, and there were no matching donors for her on the registry.
Finding a Donor
The bone marrow transplant team at New York-Presbyterian / Weill Cornell Medical Center acted fast to test her brother Reggie back in the Philippines as a potential donor.
Luckily, he was a 100% match.
However, this fantastic news still presented a barrier.
Herzel is a smart, hard-working young woman. Although she was unable to maintain her employment during so many visits and treatments at the hospital, she kept her living expenses low and paid her bills on time.
But the expense to bring her brother to the U.S., so he could transplant his stem cells, was unaffordable at the moment. Her savings had already been depleted.
She didn’t know what to do. Her doctors wanted to schedule the transplant as soon as possible.
No organization was able to fund international travel for her donor.
A social worker at New York-Presbyterian contacted the Icla da Silva Foundation. After gathering and organizing the necessary paperwork, and thanks to the generous supporters of the Foundation, not only did we provide the funds, we made the flight reservations.
Within days, this life-threatening financial barrier was removed and Herzl’s brother arrived in New York for the donation. The transplant was successful and Reggie saved his sister’s life. They spent a few days together before he returned home to the Philippines.
The gift of life that Herzel received only strengthened her desire to help others.
She passed her nursing exams and recently began working for the NYC Department of Health. Herzel is thankful for the support that she received and has applied to Volunteer for the Icla da Silva Foundation.
We asked Herzel what she would say to the donors who made her brother’s trip possible.
“I want to thank everyone for giving me this opportunity to live a healthy life again. I couldn’t be any more grateful for the Icla da Silva Foundation. I want to help the Foundation as much as I can so other patients like me can have the same opportunity for life.”
You can help us support more patients like Herzel. Your donation will remove barriers for patients needing a bone marrow or cord blood transplant.
Your donation will save lives.
Written by: Bret ItskowitchMiguel’s Dilemma – How Icla Restored Hope
Miguel began to lose hope when his daughter was diagnosed with leukemia. The Icla da Silva Foundation offered to help his family through our Icla Cares program. Watch Miguel share his heartfelt perspective in the video below.
We were first introduced to Miguel and his family through a social worker. His 5-year-old daughter Marieangel had just been diagnosed with leukemia. Like most parents of a child diagnosed with blood cancer, Miguel was lost and confused.
He didn’t know what to do.
We sat down with Miguel to answer all of his questions and explain the process. We reviewed the next steps in plain language. We let him know what to expect and how we could help.
Marieangle received months of chemo treatment and her leukemia went into remission.
Unfortunately, during Covid-19, her leukemia relapsed. At the same time, Miguel lost his construction job.
What is a hardworking family supposed to do? How will they continue to pay the bills while their young daughter is in treatment and waiting for a bone marrow transplant?
How Icla Restored Hope
Miguel began to lose hope. He had nowhere else to turn. The Icla da Silva Foundation offered to help his family. We assured him that we would be there for support throughout his daughter’s treatment.
While financial assistance removes the constant stress of how to pay the bills, providing information and support to Miguel was more important to him. We gave him knowledge and helped him understand. By providing emotional support, he felt more encouraged. He knew that we were here for him, and he recognized the valuable role he played in his daughter’s treatment.
As a result, he regained hope. Miguel rejoined the fight for his daughter’s survival.
Watch this short video – Listen to Miguel share his heartfelt story.
Support Icla Cares
You can help us assist more patient families like Miguel. With your financial donation, we provide emotional, logistical, and financial support to patients suffering from blood cancers and sickle cell disease. These needs are critical.
Please consider making a financial gift and supporting our lifesaving mission.
Thanks for reading/watching.
Written by: Bret ItskowitchPennsylvania Teen Raises Awareness in Honor of Her Father’s Fight with Leukemia
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 patients across the country who need a transplant, lack a matching donor. That’s why constantly signing up new people between 18-40 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 dreamwork 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
Fort Myers Woman Meets German Stem Cell Donor – FOX 4 Now, Southwest Florida
Andrea McCarraher was diagnosed in September 2015 and after rounds of chemo, she was placed on a list for a stem cell donation.
The donation eventually came via 26-year-old Daniela who lives in Germany.
According to Daniela, signing up to donate stem cells is pretty common there.
“It’s not special… A lot of people do it.”
It may be no big deal in Germany, but it was life-changing here in Fort Myers, where Andrea says she aims to make the most of her second chance at life by encouraging others to donate.
Read the story from Fox 4 News in Southwest Florida here..
Watch the video
Inspired to jon the registry and potentially save someones life?
join the registryA Soldier Receives a Spider Bite in Afghanistan and they Find Leukemia
Miguel Leyva Campos grew up with his family on Catalina Island, just a one-hour ferry ride from Long Beach, CA.
He enlisted in the Army after High School and was eventually deployed to Afghanistan. After a year in Afghanistan, and only one week before returning home, Miguel was bitten by a spider.
Miguel told us that after the bite, he was noticeable tired and nauseous. He had unexplained body pain and he often felt faint. Was this from an Afghan spider bite?
Upon returning to the U.S., he mentioned his symptoms to the doctors during his post-deployment medical check. In 2013, after testing, Miguel was diagnosed with Acute Lymphoblastic leukemia (ALL). It had nothing to do with the spider.
He went through chemo while attending Long Beach City College. Over time, his body went into remission and he began to feel strong again. Tests showed no evidence of disease. He eventually became employed by harbor patrol and his life progressed.
In April of 2019, memories of that spider bite came back to him. Miguel became nauseous and tired again. Blood tests revealed that his cancer had returned.
He is now back on chemo treatments and doctors have recommended a stem cell transplant.
Miguel’s Next Battle
His next battle is not on the fields of some far off land. Miguel is fighting to find a cure, right here on U.S. soil. He is searching for a matching blood stem cell donor.
Despite everyone being tested, there is no match in his family. Of all the cancer patients in need of a stem cell transplant, 70% turn to Be The Match and the National Bone Marrow Registry. They need to find an unrelated donor.
Miguel’s doctors have been checking the Bone Marrow Registry and there is no matching donor for him.
His battle with leukemia will be difficult enough. But because he is Hispanic, this veteran has a lower chance of finding a matching donor. There simply aren’t enough Hispanics and Latinos on the Registry.
Hispanic cancer patients only have a 46% chance of finding a matching donor. White patients have a 77% chance of finding their donor.
We Are Here to Help
The Icla da Silva Foundation is joining Miguel in his battle with Leukemia. We are the largest recruitment center for Be The Match and we focus on adding more diversity to the registry. Our mission is to ensure that all patients have a greater chance of finding their matching donor.
You can help us in this fight. Include yourself on the Registry by clicking the link below. You will set up an account, answer some basic questions and then you will receive a swab kit in the mail.
After returning the kit, you will be included in the Registry. Only 1 out of every 430 people who register, end up matching a patient in need…so we must add as many potential life-savers as we can.
Join us in this latest battle. We need to find a match for Miguel.
join the registry – help miguel
Written by Bret ItskowitchRhynett’s 2nd Battle With Cancer
More than 25 years ago, Rhynett Chatman was diagnosed with cancer. She fought that battle and was fortunate to survive.
Now she is fighting cancer once again.
In May of 2017, she was diagnosed with Myelodysplastic Syndrome (MDS). MDS is a form of blood cancer which prohibits the body from producing enough healthy blood cells in the bone marrow.
Rhynett told us that she always felt tired, and she lost a considerable amount of weight. Despite chemotherapy and numerous blood transfusions, there was no improvement in her condition.
Most Recent Diagnosis
Recently, her diagnosis was changed to Acute Myeloid Leukemia (AML). There was a definitive overproduction of immature blood cells in her bone marrow. AML quickly gets worse if it is not treated immediately.
Doctors advised Rhynett that she would need a bone marrow transplant in order to survive.
Searching for a Match
For African American patients with various blood cancers like leukemia, finding a matching bone marrow donor is a difficult task. The chances of finding a match on the national registry are only 23%. There simply aren’t enough Black donors on the registry. For comparison, White patients have a 77% chance of finding a matching donor on the registry.
We are trying to change this unfortunate fact.
The Icla da Silva Foundation is the largest recruitment center for the Be the Match registry. Our efforts are focused specifically on adding more diversity to the list of potential donors.
We are trying to help Rhynett find a matching donor by holding donor drives. We share her story, explain the need, and provide details on joining the registry and donating stem cells if you match a patient in need.
Anyone between the ages of 18-40 can join the registry at no cost. If you match a patient, they don’t even use your insurance to perform the transplant. Be the Match takes care of everything.
To join the registry in support of Rhynett, please click this link:
join the registry
Rhynett’s Search for a Donor
Unfortunately, there is no matching donor in her family. And there is no match for her on the national registry.
We are doing everything we can to share her story and enable more people to join the registry on her behalf.
Rhynett tells us that her body hurts. “I get tired easily. I have been receiving blood transfusions for months now…it’s all very overwhelming, but God is in control”.
She is grateful for the support of her friends and family. She is also thankful for her church family at the Northside Church of Christ in Jacksonville, Florida. She has been worshipping at Northside since she was 14 years old.
She Has Faith
Despite her battle with this life-threatening disease, Rhynett has faith that God will provide.
She enjoys reading, traveling, and singing. She has traveled and sung extensively, trying to be an encouragement and a blessing to the Brotherhood of her church. She loves singing and spreading the “Good News” through the gift that God has blessed her with.
Rhynett sang for many years with her church group Total Praise, as well as the Northside Acappella Mass Choir.
“Singing has always been the thing that kept me motivated and content. I miss it so much.”
Unfortunately, chemotherapy has affected her vocal cords.
Join the Registry
Please help us in Rhynett’s search to find a matching bone marrow donor. Join the registry. After clicking the link, follow the prompts to create an account and register to become a potential donor.
You can also help us spread the word by sharing Rhynett’s story.
join the registry
“I know if you can help in any way, you will. May God bless each of you for your kind hearts and loving spirits.”
-Rhynett ChapmanTwo Times: Two Diagnoses and Two Bone Marrow Transplants
Priscilla Lee seems to have a history of “twos”.
She is both intelligent, and funny. She spends time with her family in two vibrant cities, New York City and Hong Kong. She graduated from Indiana University after majoring in both Math and Economic Consulting. While at Indiana, she learned figure skating and broke her wrists, both of them, at the same time. Priscilla enjoys comedy, so she took improv lessons at both the Upright Citizens Brigade and, you guessed it, “Second” City. She performed improv, wait for it…twice.
Unfortunately, two times is not always better than once. Priscilla has also been diagnosed with leukemia, two times. She received one bone marrow transplant and is waiting for her second.
Diagnosed With Leukemia
She was first diagnosed with AML, acute myeloid leukemia, in December 2012, while on winter break with her family. For patients with AML, the bone marrow makes cells that have not completely matured, and the body is unable to ward off infections.
They found a matching bone marrow donor on the Be The Match registry and she received a transplant from an unrelated donor.
In May 2018, she relapsed and was also diagnosed with ALL, acute lymphocytic leukemia. Priscilla was immediately put under chemo, again. Her oncologist told her that the only way to remission is another bone marrow transplant.
Priscilla was extremely fortunate to be able to find a matching donor, a second time. Although she is constantly smiling, she is obviously anxious, and her family and friends are concerned about her well being, while she prepares for her second bone marrow transplant.
Challenges In Finding A Match
Priscilla is well aware of the difficulties that most ethnic minorities have when searching for a matching donor. Asians only have a 41% chance of finding a match, yet she was able to find a match, two times.
Since patients are most likely to match someone with the same ethnic ancestry, it is important for people with diverse ethnicity to include themselves on the registry. Many patients have very little chance of finding a matching donor.
Priscilla is both positive and strong. She is thankful for the selfless support of her parents, who still inspire her with their strength.
She is also incredibly grateful for the opportunity given to her by her donors, both of them. Two people have given her an opportunity for a second chance at life.
Her friends and family think Priscilla is brave, to be able to go through such adversity at a young age. Priscilla considers her bone marrow donor to be the truly brave soul. He had a choice. He chose to include himself on the Be The Match registry, and although he was under no obligation to agree to a donation when he was matched to Priscilla, he did. He donated and added years to her life. He became her superhero.
You can become someone’s superhero by joining the registry.
become someone’s superhero
Priscilla thinks it is important for those who are willing and able to join the registry to know exactly what they are giving. They are giving life, but they are also supplying hope. Not just to a patient in need, but to their entire family, as well as their extended network of friends. A person who joins the registry and agrees to donate will touch many people through their selfless act. We hope they inspire many more to do the same.
Joining the Registry
Anyone between the ages of 18-40 can join the Be The Match registry and give hope to the many patients searching for a matching donor. After clicking the link below, you set up an account with an email and password. You complete the online registration by answering some basic eligibility questions. You will receive a simple, do-it-yourself HLA typing kit in the mail. The kit includes everything you need to collect a sample of cells from your cheek, using 2 cotton swabs. Once you return the kit, you will be added to the registry. Hopefully, you will receive a call that you match a patient in need.
Only one in 430 people who register will match a patient and go on to make a donation.
Priscilla has another superhero waiting in the wings. Someone else who was brave enough to join the registry and agree to donate their stem cells to a complete stranger.
Her second fight has just begun, and it will continue. We appreciate that Priscilla is sharing her story, and we hope it will inspire more superheroes to join the registry on her behalf.
Please join the registry today, you will supply hope and opportunity to many patients, as well as their families and friends.
Make a difference, join the registry.
join the registry
Written by: Bret ItskowitchSearching for a Bone Marrow Donor – Guided by Angels
Life is a series of ups and downs. For some, it’s not an even balance, but we keep the faith and find a way to move forward. This is the story of Naileen Colon. Naileen faces many struggles, but she has faith in the guidance of her angels.
Naileen grew up in Ponce, on the southern coast of Puerto Rico. At the age of nine, she was diagnosed with megaloblastic anemia, a condition in which the bone marrow fails to produce mature red blood cells. She maintained a healthy lifestyle to treat it. She lived a pretty normal, happy life for the next 15 years. She got married, had a baby and kept moving forward.
Unfortunately, in 2013, Naileen began to feel very weak. She was always tired and she was struggling with depression. After visiting her doctor, she was diagnosed with Chronic Lymphocytic Leukemia (CLL), a cancer of the blood and bone marrow.
Unfortunately, it was barely more than a year when she had her first relapse. This began a downward spiral for Naileen.
She had to resign from her job, her husband left, and she moved back into her mother’s house with her son. Moving back home was a very difficult transition. Her son Onix is autistic, and requires a lot of attention. In addition, her mom was ill and constantly in and out of the hospital. Naileen struggled to find a balance between taking care of her son, her mother, and herself. She held onto her faith and remained confident that God would not leave her side. She was being guided by angels.
Her First Angel
In 2015, it was determined that her blood transfusions were not working as planned. Her cells were not reproducing. Naileen was advised that she would need a bone marrow transplant.
At this time, Naileen talks about meeting an ‘angel’, Elba Lebron. Elba is a community engagement representative from the Icla da Silva Foundation. Elba organizes donor drives and works closely with patients throughout Puerto Rico who are in search of a life saving bone marrow donation. Elba provided the support that Naileen needed to continue moving forward. With Elba’s help, they hosted numerous marrow drives in Puerto Rico. Naileen felt better about her diagnosis. She realized that she wasn’t alone. In raising awareness during the donor drives, she gained more hope. She focused on helping others. Even if she could not find a match for herself, she may be able to help others to find a match. That feeling gave her satisfaction. Her friendship with Elba was a major turning point in Naileen’s journey.
Her Second Angel
Naileen began a pill form of chemotherapy and was slowly restoring her health. She established a friendship with a man named Jerardo, who became her second angel. As time passed, they began dating and a romance quickly blossomed. “It felt like a blessing, I didn’t think anyone would want to deal with something like this. He is always there for me, helping me, and he is a great father to my son. My mom was happy to see things turn for me. We moved to Kissimmee, Florida in August 2016. We wanted a better quality of life, and access to more advanced treatment for myself and my son Onix.”
Naileen enjoys watching movies at home with Onix and Jerardo. She loves the beach, but because of her diagnosis and the risk of infection, she can’t visit as often as she would like. She loves being a mom, taking care of Onix and watching him progress in his everyday interactions with people. Watching him play makes her happy. Naileen has managed her challenges and is happy with her accomplishments so far, especially with her son, but she wants to do so much more. She understands that the ups and downs will continue, and although there are times when she questions what will happen next, Naileen knows that God’s plan is far more than what she can imagine. She puts all of her trust in him, and the guidance of her angels.
The Next Challenge
Naileen is in desperate need of a bone marrow transplant. The doctors have been searching the national registry for a matching donor for 3 years. Finding a matching bone marrow donor is not an easy feat, especially for patients with Hispanic or Latino heritage. There is currently no match for Naileen on the Be The Match bone marrow registry. The registry is the largest and most diverse in the world, but patients of Hispanic origin only have a 46% chance of finding a potential match.
The solution to this challenge is to get more people, especially those with diverse ethnic origins, to join the bone marrow registry. You can join online in less than 10 minutes, and agree to become a potential donor for patients like Naileen.
Please join the registry, for Naileen or the 14,000 other patients who are searching for their match.
JOIN THE REGISTRY
You can also help by sharing Naileen’s story. As we increase awareness of the need for more potential donors, especially for people with diverse ethnicities, we hope that more people will understand the importance in joining the registry. The donation process is not difficult and there is no reason to be afraid. You can read more about it here: donation process
Thank you for reading Naileen’s story. We hope that her angels will help us guide more potential life-savers to join the bone marrow registry. It can start with you.
Surviving Cancer While Being Ethnically Diverse
We live in a world that is becoming more ethnically diverse. This diversity makes every one of us richer in experience, knowledge, and understanding. Every day we observe different cultures, practices, foods, and religions. We recognize people for who they are, with different skin color, dress and speech.
We understand that diversity makes each one of us unique.
We celebrate it. We honor our heritage and our own ethnic background. We tell stories and share traditions with our sons and daughters, and we reflect on the uniqueness that makes us who we are.
For patients suffering from a blood cancer like leukemia, lymphoma or sickle cell, being ethnically diverse can challenge their survival.
70% of patients in need of a bone marrow or stem cell transplant, do not have a matching donor in their family. As a result, they rely on the NMDP registry, managed by Be The Match, to find a potential donor, a matching donor.
The best chance for a match is to find someone of similar ethnic ancestry who is willing to donate stem cells or bone marrow.
Unfortunately, many ethnicities are currently underrepresented on the registry, making it more difficult for those patients to find their match.
The Icla da Silva Foundation focuses on adding more ethnically diverse donors to the Be the Match registry. We strive to educate and inform more people about the importance of adding yourself to the registry and giving more hope to patients who are searching for a potential donor.
Answering The Challenge
There are 3 common questions regarding becoming a potential donor and giving a patient a second chance at life.
A. Is It Difficult?
Joining the registry to be included in patient searches is easy. Click any of the links on this page, set up an account with email and password, and answer a few questions. A swab kit will be sent to your home. Once you swab the inside of your cheek and return it to Be the Match, you are entered into the registry and included in patient searches.
Everyone should do it.
The total registration process takes about 8 minutes…10 minutes if you type slow like me.
B. Is It Scary?
There has been a lot of misinformation about bone marrow donation in movies and popular culture.
None of it is true.
There are two ways to donate bone marrow, (1) the more common PBSC method, performed at an outpatient clinic, and (2) a donation performed surgically, at a hospital.
- 80% of donors make their donation through PBSC (stem cell donation), which is a non-invasive outpatient procedure. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
- 20% of donors do so with a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone.
C. Is It Expensive?
The cost to donate bone marrow or stem cells is 100% free and doesn’t utilize your insurance. Be the Match will make sure that you have everything you need to donate. Whether it’s a ride to a transplant center, a letter explaining your donation to your employer, or help with childcare, Be the Match will be there for you.
Consider A Simple Solution
Join the Registry
Everyone can become part of the solution by joining the Be The Match registry. Inform your family and friends about the importance of adding themselves to become potential donors. You may become a life saver to a patient in need, a patient who does not have a match.
What would you do if you were faced with the challenge of dealing with a blood cancer like leukemia or sickle cell? Where would you go to search for a matching donor? How would you find someone who shares a similar ethnic background to you? There are over 14,000 patients who currently need a matching donor. Many will not survive because they can’t find someone like them, someone like you.
Remember, ethnically diverse patients are not well represented on the registry. If you are ethnically diverse, you are the only one who can change this fact.
JOIN THE REGISTRY
If you have already registered, thank you. There are other ways that you can help us add more diversity to the registry.
Host A Drive
Are you involved with a group or organization that is ethnically diverse? Join forces with us and host a donor drive at your school, work, or social organization.
We do all of the work, you just have to make the introductions.
HOST A DONOR DRIVE
You can also volunteer, and work with us to make our donor drives bigger, better and more inclusive.
BECOME A VOLUNTEER
The Donation Process
Do you still have questions about the donation process?
Please join the registry and give greater hope to patients in need, it’s their only chance for survival.
Remember, you may be someone’s cure.
Sign Up. Save a Life.
JOIN THE REGISTRY TODAY
Written by Bret Itskowitch