The Icla da Silva Foundation removes barriers to treatment for bone marrow patients. Some of these barriers may seem less consequential, but to the mother of a patient with blood cancer, any support can make a world of difference.
We were recently introduced to Josephine and her 13-year-old son Nathaniel by a social worker at the Children’s Hospital at Montefiore. Nathaniel was diagnosed with acute lymphocytic leukemia (ALL), a cancer of the blood and bone marrow. His only cure was a matching bine marrow transplant.
Fortunately for Nathaniel, his little brother was identified as a matching donor and he is receiving a transplant.
But his mother Josephine had another barrier. As a single mom with two children, she needed to afford someone to watch her younger child so she could be with Nathaniel during his treatment after the transplant.
She couldn’t be in two places at once. This was her barrier.
The IclaCares program was able to help a mother fulfill an urgent need. We were able to remove her barrier in less than a week.
Our support enabled Josephine to place one of her challenges on the back burner, so she could focus on her son while he received his bone marrow transplant and treatment.
We were able to help Josephine and her family thanks to the support of our donors.
Please consider making a donation to help us support more patient families with urgent needs. Even a small donation can remove a barrier that isn’t often considered.
The Icla da Silva Foundation appreciates your support. We know patients like Josephine are extremely grateful.
MAKE A DONATION
Written by: Bret ItskowitchCOVID-19 Will Not Stop Us From Saving Lives!
Social distancing has changed the way we react with one another. This pandemic certainly has affected how we save lives. But it will not stop us!
Patients are relying on us in their search for a cure.
The Icla da Silva Foundation is a non-profit with a simple mission. We save lives by recruiting stem cell donors. The more donors we add to the national registry, the greater the likelihood of finding a cure for a searching patient.
A stem cell donor is the only cure to life-threatening diseases like leukemia, lymphoma, and sickle cell.
We used to recruit potential donors by visiting universities, schools, and churches across the country. We held ‘recruitment drives’ where we would explain the needs and challenges to a larger audience. We would set up a table in high traffic areas and invite people to include themselves on the registry. We asked them to be a cure for a patient in need of a transplant.
These public drives are no longer happening. And while no one is sure about the future of social distancing for safety, we cannot afford to ‘wait and see’.
Blood cancer and sickle cell will not wait. A patient searching for their life-saving donor cannot wait to see what happens. Their life depends on finding a matching donor.
So we continue our mission. We are using every platform to spread the word and we continue to register more life-savers.
We post more often on social media, sharing patient stories.
We have been engaging student groups in Zoom meetings, sharing information, and presenting the challenge to those who are willing to listen.
As it turns out, people are listening. They are joining the registry. Many are willing to save a life…but it can be painstakingly slow.
Still, we move forward. Patients and their families are counting on us.
Do you have any ideas to help us reach more people? Do you know someone willing to save a life by adding themselves to the Be The Match registry?
Maybe you have a Facebook group where we could share patient stories? Perhaps you have a Zoom meeting that we could join to present a 10-minute life-saving challenge?
Please send me an email, I would love to learn more and I welcome the invites. You can help us save more lives in this socially distant world.
You can reach me via email here: email@example.com
Thanks for reading. Together we will save more lives.
join the registry today
Written by: Bret ItskowitchShe Battled Cancer, and Almost Didn’t Make It
Watch a Cancer Patient Finally Meet her Guardian Angel, the Girl Who Donated her Bone Marrow
Every year, the Icla da Silva Foundation hosts our Hope Gala in NYC. The highlight of the evening is the first time meeting between a patient and their life-saving bone marrow donor. The meeting happens on stage, in front of many supporters, most of whom are crying as the patient and donor share their story.
You can read about the Hope Gala here, but this tells the story of one of those patients…and their matching donor.
The Patient – Stephanie Cisne
When Stephanie was a freshman in college, she fainted for no apparent reason. Her friends got her up and took her to the ER. The doctors checked that she didn’t have a concussion, and said that she was just malnourished.
Over the next few weeks, Stephanie continued to feel weak. She came close to fainting a few more times, so she went in for a check-up.
After reviewing her bloodwork, the doctor sent her to a cancer specialist.
On March 10, 2014, Stephanie was diagnosed with AML (acute myeloid leukemia), with an FLT 3 mutation. The cancer was very aggressive. She was hospitalized immediately.
An FLT 3 mutation meant that her body was actually encouraging the growth of the leukemia cells.
The oncologist said that she would need a bone marrow transplant, as soon as possible, in order to survive.
Her family began working with the Icla da Silva Foundation and we immediately started organizing marrow drives.
Fortunately, a matching donor was identified very quickly. On August 6, 2014, Stephanie received her bone marrow transplant.
She Almost Didn’t Make It
But her journey wasn’t over. Many complications followed the transplant.
She battled serious infections and septic shock. One leg was on the verge of amputation. Stephanie had developed a life-threatening liver disease, followed by kidney failure.
Then her body went into a coma. They weren’t sure she would wake up. The doctors gave her 72 hours.
Small Actions – Big Results
Fortunately, Stephanie is a survivor. She took her battles head-on and never showed fear. She is now cancer-free, thanks to her doctors…and her life-saving bone marrow donor.
When we asked her what she would tell people who were considering joining the registry, she reminded us that “small actions can have big results”.
Stephanie explained to us, “That small gesture of swabbing your cheek, to see if you are a match for someone, will literally change your life. When you go through a donation, when you utilize the power you have to save a life, you gain a connection with a complete stranger. You will have made a difference in someone else’s life. You would touch an entire family.”
“You will give the gift of life to a long list of friends and relatives that you never even knew existed.”
The Donor – Crystal Dozier
Crystal was on the other side of the country when she joined the registry in 2007. There was a blood drive at her school and representatives from Be The Match were at that blood drive to sign people up for the registry.
Crystal came to donate blood and she was inspired by another opportunity to help people, so she joined the registry.
In the summer of 2014, while at lunch with her mother and sister, she received the call that she matched a patient in need. Crystal agreed to donate her bone marrow.
What Was the Donation Process Like?
Crystal explains that she did a lot of health-related interviews over the phone, followed by a number of blood tests and screens. In addition to checking that she was the perfect match for a patient, they also wanted to ensure that her health would not be subject to any challenges.
Crystal told us, “The actual donation was over before I knew it…literally. They knock you out for it. And the recovery wasn’t too bad. Everyone involved was so nice and helpful; they made all my appointments, took care of all the paperwork and financials, all I had to do was show up. The whole thing was relatively painless.”
5 years after the transplant, Stephanie and Crystal had the opportunity to meet for the first time. It happened on stage, in NYC, at the Icla da Silva Hope Gala.
In a ballroom filled with 300 onlookers, Stephanie and Crystal met face-to-face. They didn’t know each other…now they are sisters. You can watch the video below.
Not everyone who joins the registry ends up matching a patient and saving a life, but you have to take that first step and include yourself.
Please consider joining the registry in honor of Stephanie and her donor Crystal.
join the registry
This story ends with a quote from Crystal to Stephanie…”I know the past few years haven’t been easy but you’ve traveled through them with immeasurable dignity and grace. I am so incredibly proud of you and honored to meet you. And just because the donation is over doesn’t mean my involvement in your fight is over. We’re in this together.”
Please consider joining the registry. As Crystal says, “we’re in this together.”
Written by Bret Itskowitch
A Little Girl From Miami is Saved by a Stranger from New York
Watch an 8-Year-Old Girl with a Life-Threatening Disease Meet Her Life-Saving Bone Marrow Donor
It was a once in a lifetime meeting…and it happened on stage, in front of a crowd of 300 tearful witnesses at the Icla da Silva Foundations annual Hope Gala.
The Gala is an end-of-year fundraiser, celebrating achievements and thanking supporters. You can read about it here.
The highlight of that evening was the face-to-face, first time meeting between a patient and their life-saving bone marrow donor.
The Patient – Giliani Lacayo
8-year-old Giliani Lacayo was the patient. She was brought to the stage by her mom Diomaris. Giliani was diagnosed with Kostman’s syndrome, a rare disorder of the bone marrow. Children born with this condition lack the white blood cells that are important in fighting infection.
The doctors told Giliani’s mom that her only cure was a matching bone marrow transplant.
In February of 2015, at the age of 4, Giliani received a cord blood transplant. But unfortunately, one month later, the family was told that the transplant did not take.
As you might expect, Giliani’s mom was upset. She was fearful and very concerned. They had gone through this devastating process…months of hospitalization, four times with pneumonia, intense antibiotic treatments, daily injections of white blood cell boosters…and in the end, they had gotten nowhere.
Her 4-year-old little girl was not yet saved.
The doctors began the search for a matching bone marrow donor on the national registry. There are more than 20 million potential donors listed on the registry, but it’s all about the match. When a patient and donor share the same ethnicity, when they match, the chance for a successful transplant is much higher.
The search for a donor is more difficult for patients like Giliani, who are ethnically diverse. While White patients have a 77% chance of finding a matching donor, the chance of finding one for a Latino patient is only 46%; it’s even lower for African American patients.
Fortunately for Giliani, and despite her Hispanic origin, a match was found. Her name was Marta Sanchez, and she said yes when she received the call, asking her to donate her bone marrow.
The Donor – Marta Sanchez
Marta remembers joining the registry at a drive run by the Icla da Silva Foundation. It was at the Dominican Embassy in NYC. She insists that joining the registry was no big deal. When she learned that she may be the cure for someone like her, she was happy to add her name and information.
Seven years later, she received a call that she was a match for a patient.
Two days before Christmas, in 2015, Marta went to the hospital and donated her bone marrow.
At the time, she was going through some very difficult personal challenges. She had also received a lot of negative reactions from friends who declared it was dangerous and painful.
Marta insists that it was not dangerous or painful. She knew in her heart that it was something she had to do. Someone was counting on her.
Despite all that she was going through, even though she was concerned about not having enough to gift her beautiful daughters on Christmas, she knew that giving the gift of life to a complete stranger would be a blessing from God.
On Christmas Eve in 2015, little Giliani Lucayo received her life-saving bone marrow transplant from Marta Sanchez.
To watch Giliani’s mother express her gratitude for Marta’s selfless act was heart-wrenching. They embraced on stage for the longest time and it was a beautiful thing to witness.
We were fortunate to watch the story unfold on stage.
A young girl suffering from a rare disease. A mother struggling to understand what will happen next. And a selfless woman, navigating her own challenges, who took the steps to unanimously give life to an unknown person.
There wasn’t a dry eye in the house. You can watch them meet in the short video below. At 2:55 little Giliani thanks Marta for saving her life.
You Can Play A Role
Giliani’s mom Diomaris, gave us her reaction to Marta’s life-saving bone marrow donation for her little girl, “There are no words for what she did. I’m thankful for her every day. I pray for her and her family every day. My whole life I will be thankful for her, she is part of our lives, she is part of our family. “
You could save another person’s life. You may be able to give joy to an entire family by donating your stem cells or bone marrow to a patient who doesn’t have a match in their family. Please add yourself to the Be The Match registry by clicking the link below. You will receive a swab kit in the mail. As soon as you return the kit, your name will be included in searches for matching donors.
Be like Marta. Do it for patients like Giliani.
join the registry
Thanks for reading.
Written by Bret ItskowitchHow You Can Help Save This Little Boy’s Life – Modern Wellness Guide
Alfredo Diaz is suffering from an extremely rare disease. A blood stem cell transplant, from a genetically matched donor is his only hope for a cure.
His mom, Natalia Torres, is confident that a matching donor will be found. “There’s one out there, we just have to find him or her.”
We are searching for Alfredo and his family…you can help us by joining the registry and sharing Alfredo’s story.
join for alfredo
read his storyCalle Ocho Music Festival – Not Giving Up
At 6 AM on Sunday, March 10, representatives from the Icla da Silva Foundation were at the Calle Ocho Music Festival in Miami, Florida.
For the team members who attended, it had nothing to do with music. It was all about supporting the family of Julian Morales, with the hope of finding a matching stem cell donor in order to save his life.
It was about Saving Julian.
Fighting For His Life
It was about setting up tables and organizing volunteers so that more people understood the need to join the Be The Match bone marrow registry. It was about eliminating the fear of joining and explaining the fact that only 7% of people on the registry are Hispanic. This is why patients with a Hispanic or Latino background have a more difficult time finding a match. There aren’t enough potential donors on the registry.
Being at Calle Ocho was about doing everything we can to give Julian a 2nd chance at life.
It was about adding more potential life-savers to the registry.
Watch Julian and his Mom on NBC Miami
Not Giving Up
Julian suffers from a rare, life-threatening blood disorder called Dyskeratosis Congenita and bone marrow failure. He has been suffering for 4 years. Since there is no match in Julian’s family, they need to find a donor who is not related. They have been searching for a match for 4 years. There is still no match for him on the Be The Match registry.
As you would expect, Julian’s mother Mayra is desperate to save her son’s life. She is pleading for help from the Hispanic community, “…it’s a matter of life and death.”
For the Icla da Silva Foundation, this past Sunday was about not giving up. We can listen to music later.
Right now we need to find a matching donor for Julian.
You can join the registry by clicking the link. You will receive a kit in the mail which is used to swab the inside of your cheek. When you return that kit to Be The Match, they will test your HLA type to see if you are a potential match.
You or someone you know may be a match for Julian. Please join and share with others.
JOIN THE REGISTRY
What Is It Like To Give To A Stranger? – A Bone Marrow Transplant Story
Have you ever given to a complete stranger?
to Give [giv] verb: to freely transfer possession of something to someone: to hand over, without expecting compensation
Michael Powell is a “giver.” He regularly donated blood. He also donated his bone marrow. Twice. Once with a stem cell transplant, and again through a bone marrow transplant. He gave, not knowing where, or to whom it was going. He is a giver.
In 2007, while at a company blood drive in NYC, he met some folks from the Icla da Silva Foundation. They were asking people to consider joining the Be The Match bone marrow registry. Most blood cancer patients, people with varying forms of leukemia, lymphoma, or sickle cell, don’t have a matching donor in their family. They require a transplant from a stranger in order to survive. Their doctors search the Be The Match registry, looking for a matching donor.
On the day in 2007, after he finished donating blood, Michael joined the bone marrow registry. He filled out some forms, swabbed his cheek, and was entered onto the registry. It was that simple. The process is now digital, and they mail the swabs to your home, but anyone between the age of 18 and 44 can join.
Michael agreed to donate his stem cells or bone marrow, should the need ever arise.
Matching and the Challenge
Unfortunately, that need arises every day. Approximately 14,000 times every year. The challenge is in finding the perfect “match” for those patients in need of a transplant.
Only one out of every 406 people on the registry will match and donate. A match is usually determined by a person’s ethnic ancestry. An African American patient is most likely to receive a successful transplant, a perfect match, from an African American donor. Michael wasn’t aware of it at the time, but African American donors are in short supply. For the African American patients with a blood cancer or sickle cell, only 23% are able to find a match on the current registry. By comparison, Caucasians are able to find a successful match 77% of the time.
There simply aren’t enough potential donors included on the registry, especially donors of ethnic diversity. The Icla da Silva Foundation is doing its best to change that by specifically holding registration drives within diverse communities.
You can join the registry by clicking the link. You may match a patient in need.
join the registry
Michael’s First Bone Marrow Donation
In 2013, six years after joining the registry, Michael received a call that he was a match. He had forgotten that he was even on the registry. Be The Match explained the process and asked if he would be willing to donate his stem cells through a PBSC donation.
They scheduled a check-up, to make sure he was physically fit, and organized some tests to ensure he was a perfect match. The donation process includes injections of filgrastim, which helps increase the number of blood-forming cells in the body. Be The Match organized a visiting nurse, who came by his apartment daily, for the filgrastim shots.
Five days later, he donated at Memorial Sloan Kettering hospital in NYC. It took about 4 hours. His blood was removed through an intravenous needle in one arm, passed through a machine that collected the blood-forming cells, and the remaining blood was returned to his body through a needle in the other arm.
Michael told me that Be The Match took care of everything. They offered to have someone go with him to the hospital. They organized a car to pick him up and take him back home. They even paid for a meal for him and a friend after his donation.
He insists the process was easy and pain-free. He had some joint stiffness for a few days, but he would recommend that everyone join and donate if they are offered the opportunity.
The next step was waiting to hear if it was successful for the patient.
Unfortunately, shortly after the transplant, due to complications from their cancer, the patient passed away. Michael was greatly affected by that news. He says “it meant so much for me to give, but to learn that the patient passed away, that was very heavy on my heart.”
Michael’s Second Donation
In 2017, he received a second call. He was a possible match for another patient.
Again, Be The Match kept in close communication and organized everything for him. They scheduled physical exams and blood tests.
While waiting to see if Michael was the best match, the patient had complications and the doctor indicated that this time, a surgical marrow extraction was the preferred method.
Michael had never stayed in a hospital before, and he had never had surgery.
Still, he agreed that he would donate.
When I asked him why he shrugged and said to me “Someone needed help and it was an opportunity for me to help that person…I couldn’t think of a reason not to do it.”
They scheduled surgery for June at Memorial Sloan Kettering, where they would extract bone marrow from his pelvic bone. He was anxious. Understandable so.
Michael tells me that the nurses and doctors at the hospital were all incredible. Answering all of his questions and making sure he was comfortable with his decision to donate his bone marrow. Right up to the very last minute, the doctor and anesthesiologist asked him if he was still comfortable going through it.
Once again, Michael said yes.
On June 1, 2017, at Memorial Sloan Kettering hospital in New York City, Michael donated his bone marrow through a surgical procedure. On June 2, a sickle cell patient received Michael’s bone marrow in a transplant at Nationwide Children’s Hospital in Columbus Ohio.
Always positive, Michael remarked that during the surgery, it was the best sleep he had ever had. He was emotionally relieved that it was over; physically, he was stiff.
Again, I kept pushing Michael about the why. I think he grew tired of me asking. His response was direct and to the point – “I didn’t think of why, I thought of how, and when do you need me. I knew I wasn’t going to be harmed from it.”
I still find his perspective to be remarkable. Michael believes that we are all connected. It is very important to him. He tells me that “we all have a chance to make a difference in someone’s life.” While that is very true, unfortunately, many people do not act on it.
Michael Powell did, and he made a difference in someone’s life. We are forever grateful.
After a transplant in the United States, the donor and recipient are not allowed to meet for at least a year. On October 17, 2018, 16 months after the bone marrow transplant, Michael was invited to the annual Icla da Silva Hope Gala. It was at the Gala that he met his patient, Aunesti Sullivan.
Every year at the Gala, we introduce patients and their donors to each other on the stage. It was the first time that Michael and Aunesti met. It was an emotional experience for everyone in the room.
Aunesti is a 13-year-old girl from Toledo, Ohio. She was born with Sickle Cell Anemia, and as a result of the Sickle Cell, was also suffering from Avascular Necrosis (AVN), or brittle bone disease.
Aunesti is doing very well. She is active, back in school, and living the life of a teenager.
Michael is happy to have made a difference in her life. He tells me they keep in constant contact via text and phone. He has agreed to work with us to help spread the word about the importance of joining the registry and staying committed to donate if you ever match a patient In need.
Anyone between the ages of 18 and 44 can join by clicking the link below.
join the registry
Thanks for reading, and thank you to Michael for making a difference in someone’s life. We are all connected.
Written by Bret ItskowitchA Time for Feeling Both Thankful and Grateful
On October 17, 2018, Aunesti Sullivan and her extended family met Michael Powell, the man who saved her life.
Aunesti, a 13 year old girl from Toledo, Ohio, was born with sickle cell anemia. At the age of 10, as a result of the sickle cell, she developed Avascular Necrosis (AVN), also known as brittle bone disease.
Needless to say, Aunesti’s young life has been filled with treatments, transfusions, and extended hospital stays.
Her doctors recommended a bone marrow transplant to cure her disease, and she was fortunate to find a 100% matching donor through the Be The Match registry. That Donor is Michael Powell, and he joined the registry through a donor drive run by the Icla da Silva Foundation.
Michael donated his bone marrow through a surgical procedure on June 1, 2017 at Memorial Sloan Kettering in New York City. On June 2, Aunesti received a bone marrow transplant at Nationwide Children’s Hospital in Columbus Ohio.
One year following the transplant, and Aunesti is doing very well. She is active, back in school, and living the life of a teenager. This past October, at the annual Icla da Silva Hope Gala in New York City, Aunesti and Michael met for the first time.
“He’s given me a quality of life, he’s given me the opportunity to be a teenager, and live life to the fullest.”
– Aunesti Sullivan
“Someone needed help and it was an opportunity for me to help that person…I couldn’t think of a reason not to do it.”
– Michael Powell
As we begin the coming holiday season, we are both thankful and grateful. One person gave and another received, and both are better as a result.
Anyone between the age of 18-40 can join the registry and become a potential donor for a patient in need. Please join.
join the registry
Watch below for a recap of their meeting at the 26th Icla da Silva Hope Gala on October 17, 2018:
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