We live in a world that is becoming more ethnically diverse. This diversity makes everyone of us richer in experience, knowledge and understanding. Everyday 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.
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.
The human spirit is alive. People are surprisingly positive and giving, kind and generous…I witnessed it first hand last weekend. Hope was everywhere.
Saturday, April 14th was the 2nd annual Mix and Match luncheon sponsored by the Icla da Silva Foundation. Despite the inherent challenges and dire consequences of people dealing with various forms of blood cancers, the room was filled with smiles and hope.
Family members stood and talked about their involvement with Icla da Silva. They shared stories about the loss of loved ones due to leukemia and MDS, but they still maintained focus on the importance of spreading the word about bone marrow donation and doing everything they could to help others, in the name of their father, son, daughter, husband, sister, wife, cousin and friend.
Donors talked about receiving the call that they were a match and feeling blessed by the opportunity to give life to someone through a bone marrow donation. Often, the process is not much more cumbersome than giving plasma, and they described the chance to donate their bone marrow as a privilege, as something they did not think twice about, as a way to save a person’s life.
Survivors shared information about their journeys, the diagnosis, the chemotherapy, the loving support from friends and family. They talked about working with Icla da Silva and Be the Match on the search for a matching donor, and they smiled about the outcome of a successful transplant.
And then there were the patients, some just beginning their journey, others surviving for longer than expected…all hoping that a matching donor could be found.
Icla da Silva Mix & Match luncheon, April 14, 2018
Some matches are harder to find. Be the Match has is the largest and most diverse bone marrow registry in the world, but it is still not big enough, or diverse enough. The Icla da Silva Foundation focuses on increasing both the size and diversity of the registry. We work to recruit potential donors from all ethnic segments in the hope that more patients will be able to find the match that they need.
You can help us save more lives by completing any combination of the following three actions:
Join the registry and add hope to the many patients looking for a matching donor. Please click the link Join the Registry.
If you have the ability to connect and communicate with a group or community organization, we can work with you to schedule a Bone Marrow Drive hosted by you or your group; please enter your information using this link Host a Drive, and someone from the Icla da Silva Foundation will contact you. It only requires a small investment of time, and the promise to gather an interested crowd.
The other way to provide support is financially. Even small donations help us to recruit more donors and provide support services to patients in need. We are a 501 (c)(3) and all donations are tax deductible. You can donate using this link Donate Funds.
Please help us continue to keep hope alive.
Patient Update: Asaya Bullock
Asaya loves karate, the color blue, and his little sister Anaya. They are best friends and they get along like two peas in a pod. He is a fun-loving little boy who is surrounded by loving parents and the support of family and friends, but he needs your help.
We have been working with Asaya Bullock and his family since 2014. Asaya has been the focus of 163 bone marrow donor drives, where we have registered 2487 potential donors on his behalf, and we continue to stand by his family for emotional, logistical and financial support. Unfortunately, these efforts have not been enough to find his cure.
This beautiful little boy needs your help.
At the age of 8 months, Asaya was diagnosed with a rare autoimmune disease called I-PEX. His parents were told he would not live past the age of two. You can read more about his story here.
In July, Asaya will be 7, which means that he has been living with this rare disease for almost seven years. He is enrolled in first grade, but he misses class often due to his compromised immune system. This past winter was rough on the family; the flu lasted for 6 weeks and Asaya lost a lot of weight. He receives IgG treatments (Immunoglubulin replacement therapy) every other week, administered by his mom so they don’t have to spend so much time traveling to the doctor. The treatments hope to increase the IgG levels in his blood, which to help fight infections.
Asaya is in desperate need of a matching bone marrow donor. His father Vincent is African American, and his mother Charlene is West Indian Caribbean. Unfortunately, Asaya’s ethnicity is under represented in the bone marrow registry. Not enough potential donors have joined, so a match has not yet been identified. Could you be his match? Do you have friends or family that could be a life saving match? Please consider joining the registry here http://join.bethematch.org/TeamAsaya. Share this post with your social media network and ask your friends to join using the links below. Get involved and host a marrow drive in your community to register more potential life savers. Learn how to do that here.
Thanks for reading, registering, and sharing. We need to work together to find a match for little Asaya.
What if You Could Save a Life?
What if you were the only one who could save a life? If you could be that hero, the one that someone has been looking for and perhaps the only one in the world who fits the criteria, would you do it? Would you take the necessary steps and give life to another?
Every year, more than 14,000 patients are diagnosed with blood cancers like leukemia, lymphoma and sickle cell anemia. For these patients, a stem cell or bone marow transplant is their only hope for survival.
70% do not have a matching donor in their family. They are reliant on finding a donor through the Be The Match bone marrow registry. It’s the largest and most diverse registry in the world, but it’s not large enough, or nearly diverse enough.
The Icla da Silva Foundation is the largest recruitment center for Be The Match. Our focus is on supporting under represented communities, and we work tirelessly to find bone marrow matches for minority groups and mixed-background ethnicities whose current donor pool is either far too small, or almost non-existent.
The simple fact is that not enough people of ethnic diversity have joined the registry. This has resulted in a registry that is currently under represented for many ethnic segments. We are working to change this. You can help by joining and asking those close to you to do the same.
Aashim Joy is one of the potential recipients still searching for his perfect bone marrow match. He was diagnosed with B-Cell Type Acute Lymphoblastic Leukemia in July last year, and he requires a bone marrow transplant. Like many blood cancer sufferers, he has no other hope of beating the disease.
One year into his marriage, his diagnosis was a shock and the new couple’s American Dream seemed to fade before their eyes. Involved in the financial sector in New York City, the couple had recently relocated from Bangalore to start a new life together in the Big Apple when Aashim was diagnosed.
Reaching out to the Be The Match Registry, the largest in the world, Aashim and Reema were hopeful of a quick match and a happy ending. Despite their time and enthusiasm, the search has been longer than expected. People of Indian descent are not common on the registry, which makes the genetic and ethnic aspects of finding a perfect match more difficult.
“The Indian community is underrepresented [on the bone marrow donation registry], which makes it more difficult to find a matching donor.”
The search is still on for Aashim’s perfect bone marrow match. Both he and Reema remain positive of finding a match, urging everyone they meet to sign up and join the bone marrow registry. Not only for the sake of Aashim and his lovely wife, but for other patients who walk this difficult road beside them.
Signing up as a potential donor is simple. If you match a patient, it is obviously a life-saving experience for the recipient, but it can also be life-changing for the donor. You are literally giving someone a second chance at life.
The process involves clicking the link, setting up an account with an email and a password, and providing some general health and ethnicity information. You will receive a swab kit in the mail. Once you return the kit, you will be included in searches for patients in need of a matching donor.
If you match a patient and are eventually asked to donate bone marrow, please say yes. The process is simpler than you think. You can read about it here. The bone marrow cells in your body are replenished within four to six weeks after the procedure and your life goes on.
Each person who joins the Registry is a new potential match for a patient in need.
If bone marrow donation is not an option for you, the following are also helpful ways to get involved and help a patient in need:
Organize a bone marrow drive.. We’re here to provide tips and suggestions on how to run a successful drive in your community. Who knows? This could be the difference between life and death for somebody waiting for a bone marrow transplant.
Donate your time.Patients and their families spend the majority of their precious time doing mundane administrative and logistical tasks while looking for assistance and finding a match. Why not offer to help out at a local clinic or volunteer at an organization like the Icla da Silva Foundation?
Give Financially.Always a great need in a non-profit based organization, financial assistance is a tremendous help in donor searches, educational awareness events, and covering economically-challenged patients’ medical bills.
Support events and fundraisers. There are people all over the world trying to assist in bone marrow donation and awareness. Go to their fundraising events, tweet about it, share a link on social media, support media efforts and invite some friends! Our 8th annual Matchmaker 5K Walk is just around the corner, sign up now.
Heritage and Ethnicity Matter!
Aashim is a wonderful example of where ethnicity and genetics play a pivotal role in bone marrow donation. The Indian donor pool is, unfortunately, not representative or diverse enough to cater to such a large population; and Aashim has not been able to find a suitable donor match thus far. The larger the pool of donors, the more diverse the pool becomes, significantly improving the probability of finding a match.
There is hope. Many of our success stories are a testament to perseverance and tenacity, often at the hands of an invested team of supporters and medical professionals. There are victories worth mentioning, and heroes who decided to take the leap.
The Flaherty Brothers
At age 3, William was diagnosed with hemophagocytic lymphohistiocytosis (HLH). The immune system attacks the body’s own organs instead of protecting it against foreign invaders. Charles was only seven at the time, but turned out to be a perfect match for his little brother and insisted on donating his stem cells to save William. The procedure was on a Thursday and Charles was back at school by the Monday morning remembering the worst part of the whole experience as having to take off the bandage!
Both brothers are now healthy and living life to the full back in Puerto Rico. After the procedure, Charles was treated to a ski trip with his father and unbelievably, it has lead to a lifelong passion. He was Puerto Rico’s single star on the Alpine Ski team at the 2018 Pyeongchang Olympics.
Smiling is a universal language, and Mya is an expert. This 9-year-old has been through an epic battle against T-cell leukemia and came out on top. Described as a ‘beautiful, positive, joyful spirit,’ she and her family are finally seeing the light after years of struggle against this devastating illness.
Chemotherapy was ineffective in treating her condition. Thankfully one of Mya’s brothers was a 100% percent match and he gladly donated his bone marrow stem cells. Her recovery is going well, but the treatment is expected to continue for the next two to five years, which means the financial strain on the family is huge.
Born at 27 weeks, Tancrede Bouveret was the spark in his father, Luc’s, eye – a tiny, perfect addition to the family. At age of eleven he was diagnosed with Myelodysplastic Syndrome (MDS), which eventually progressed into Leukemia. Unfortunately, Tancrede’s little brother was not a suitable donor (only 25% of siblings are).
After an extensive search in Brazil, the U.S.A and France, the excited family was able to locate a 100% percent match and Tancrede was saved. Complications resulted in an extra long hospital stay and a need for more lymphocytes, which his donor gladly provided. On October 18, 2017, Tancrede met his bone marrow donor for the first time at the Icla da Silva Hope Gala in New York City. It was an unforgettable moment of shared joy and hope for humanity.
So, are you open to the possibility of saving someone’s life? Take the leap and register as a bone marrow donor. Help however and whomever you can, because life is short and everyone deserves an opportunity to flourish in the time we have been granted.
Thanks for reading. Please share.
Renata Has Faith
Renata Coimbra is full of life. She is always smiling and spreads joy wherever she goes. She is very close with her family and friends, she worries about those less fortunate, and she regularly contributes to her church and her community. She is recently married, a positive role model, and faithfully leads others in prayer.
Renata was recently diagnosed with leukemia and is in desperate need of a bone marrow donor. She has begun an aggressive treatment of chemotherapy and she knows that she has a long and difficult path ahead, but she has faith that she will find a matching donor.
In 2001, she moved from Espirito Santo in southern Brazil, to Boston, Massachusetts, where she worked as a house manager and loving nanny for 13 years. Missing the tropical climate of her childhood, Renata moved to Florida in 2014, where she met and married her love, Danilo. Together, they enjoy music and movies, regularly attend church, and spend time with Danilo’s family, who has accepted her as their own.
Late last year, Renata was suffering from shortness of breath. After multiple visits with doctors and specialists, she was unexpectedly diagnosed with a lymphoma that had formed in her chest and attacked the bone marrow. It quickly developed into leukemia. She has been told that even with chemo treatments to fight the cancer in her blood, a bone marrow transplant will be necessary to ensure her survival. After multiple treatments and two hospitalizations in the short timespan since she has been diagnosed, she has been forced to quit her job and live a remarkably different lifestyle.
Before she got sick, Renata and Danilo enjoyed dancing and going to the beach on weekends. Although she misses work and her Zumba class, she has never lost faith that she will overcome this disease.
Renata’s faith is overwhelming. Early in the search, they found three matching donors. Unfortunately, none of them were ready to make the commitment to donate. Renata insists that she has the support of God, friends and family, and a matching donor will come through.
While we certainly hope that everyone who registers is able to stay committed if they ever receive the call, it is important to recognize that the vast majority of bone marrow patients require a non-surgical process called peripheral blood stem cell donation (PBSC).
A PBSC bone marrow transplant requires a donor to take injections of filgrastim over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The process is relatively simple.
Please consider registering to become a potential bone marrow donor for Renata and the many other patients who are looking for a match.
We share Renata’s faith that more people will register and stay committed.
We ask you to share Renata’s faith that more people will register and stay committed. Share her story:
TIFFANY DAVIS IS STRONG – TIFFSTRONG
Tiffany Davis is a 31 year old woman from Miami Florida. She is smart, beautiful and strong. She is battling cancer for the second time in her life and she refuses to let it beat her. Tiffany is a Warrior. At the age of 28, Tiffany found a small lump under her left arm. She had a family history with breast cancer, her grandmother died from it, but it was never really talked about. She noticed the lump during a self examination and was diagnosed in 2014. It was detected in early stage 2, and was diagnosed as an aggressive form of cancer, described as triple negative. She had chemo, a bilateral mastectomy, otherwise known as a preventive mastectomy, followed by radiation treatments. Since her cancer was ER+ (estrogen receptor positive), she was also put on hormonal therapy. Tiffany is strong and she survived her first battle, but after two years as a survivor, during a routine check-up, her labs came back with abnormal red blood cells and a low platelet count. The oncologist sent her to a hematologist for more tests. After a series of labs and a bone marrow biopsy, it was confirmed on July 31, 2017 that Tiffany had acute myeloid leukemia. This diagnosis was the result of receiving both chemo and radiation for her breast cancer. Tiffany’s best chance of survival is to receive a matching bone marrow transplant.
Tiffany remains strong. She is positive and faithful and she will not give up. She insists that the first cancer changed her. She has become more outspoken, and believes it is important to share her journey and bring more awareness to it. She believes in her strength. At 31 years of age, Tiffany is undergoing chemotherapy again. She has completed phase 1, induction chemo, which consists of 24 hour/day chemo treatment for 7 days. The process clears the bone marrow of leukemia cells, but dramatically affects the immune system and requires a 28 day stay in the hospital. Phase 2 is the consolidation process, where they try to keep you in remission, through continued chemotherapy, until a matching donor can be found.
Finding a matching donor is Tiffany’s next battle.
African Americans have a high propensity to be diagnosed with cancer. About 1 in 2 black men, and 1 in 3 black women will be diagnosed with cancer in their lifetime. Many of these cancers can be cured with a bone marrow transplant. Since African Americans have a greater genetic diversity than other populations around the world, this diversity can make finding a perfect match more difficult. This is further impacted by the fact that the African American community is simply underrepresented in the national bone marrow registry. We encourage you to join the registry and stay committed to helping save the life of a patient in need. You could be the life saving difference. Please register using the TiffStrong referral code at Be The Match.
As a warrior, Tiffany Davis refuses to give up hope. She is thankful for the support of her family and friends and she is grateful to be able to share her journey with others. She has been documenting her thoughts and findings through her Youtube channel:
You can help Tiffany and many other patients looking for a matching transplant by hosting a marrow drive of your own at your company/school/church. Every drive helps us add more donors to the registry, please click here to request more info: https://icla.org/events/host-marrow-drive/
We stand strong with Tiffany and will do everything that we can to help her survive this next battle.
WHAT IS IT REALLY LIKE TO DONATE BONE MARROW
Read as a contributor to the Huffington Post goes through the process of donating his bone marrow:
You might be the perfect match for someone. Please join the registry and save a life here: https://icla.org/join
Samantha Mitchell joined the Be the Match registry at a bone marrow drive held at the University of Wisconsin in Oshkosh, WI, where she was studying microbiology. Little did she know that she that her HLA type was a 100% match for a young boy living in Brazil with leukemia, a boy desperately in need of a bone marrow donation.
Samantha received a call from Be the Match about a month after she joined the registry. Following a blood test and a check-up, she drove the 85 miles to Madison, WI to make a peripheral blood stem cell (PBSC) donation. At the time, she had no idea that her stem cells would travel another 5,300 miles to Sao Paulo Brazil to save that young boy living with leukemia.
The process for a PBSC donation is similar to giving blood. For 5 days, the donor receives injections of filgrastim, which increases the number of blood-forming stem cells in the bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that will collect the blood-forming cells. The remaining blood is returned to you through a needle in the other arm.
Samantha says that although she was anxious about the procedure, she felt better knowing that she was directly helping someone.
After the young boy in Brazil received Samantha’s donated cells, his body had complications. He spent almost 2 years in the hospital and his doctors recommended an additional transplant of lymphocytes. Samantha agreed to a second donation without hesitation.
Samantha was finally able to meet the recipient of her cells, Tancrede Bouveret, and his entire family, at the Icla da Silva Foundation’s Hope Gala in New York City on October 18, 2017. You can read about Tancrede’s story here.
“While I already feel connected to them, words can’t express how excited to actually meet him and his family”
– Samantha Mitchell
Samantha’s Mitchell’s act of giving was selfless. The fact that she gave twice (a rare occurrence), makes her remarkable. We are grateful that she joined the registry and we are thankful that she had the commitment to save a life. Today Samantha continues to live her life, has graduated from university, and is now working at the same hospital where she donated bone marrow. Her story has come full circle.
On October 18th, Tancrede Bouveret will meet his life saving bone marrow donor for the first time, at the Icla da Silva Hope Gala in NYC. Bone marrow patients are not able to meet their donors until at least one year after a successful transplant and the meetings usually bring tears of joy.
About Tancrede Bouveret
Unfortunately, Tancrède was born at the Naval Medical Center of San Diego on May 14, 2004. His father, Luc Bouveret, always dreamed of having a child, and so with the help of a surrogate in California, Tancrede entered the world.
Unfortunatley, Tancrede was born premature, at just 27 weeks. He spent two months in critical condition at the hospital until his father Luc was able to take him home to Paris. Once back at home, Luc found it necessary to quit his job so that he could care for his son and give him the attention that he needed.
Soon after, their family expanded when Luc met his partner, David. At the age of 4, the family moved to Sao Paulo, Brazil. Luc and David decided to have another child and engaged the same surrogate in California. Tancrede, now at the age of 6, gained a brother, Elzear.
The family were living a happy life in Sao Paulo until March of 2015. Tancrede was diagnosed with Myelodysplastic Syndrome (MDS), which progressed into Leukemia.
The fathers were notified that their son had less than a 10% chance of survival. The only cure is to receive a matching bone marrow transplant. Most families have the natural assumption to use a family member, but siblings only represent a 25% chance of a match and his brother Elzear was not compatible.
Luc and David began the search to find a bone marrow donor for their son. They held drives in Brazil and utilized social media to create awareness. They gained the attention of Brazilian celebrities and soccer players, and many people registered to become donors. They requested the help of friends and family in France and the Icla da Silva Foundation helped spearhead the search in the United States.
After several months, a 90% match came through. With great hope, the fathers asked to wait a little bit longer for a 100% match. Three weeks later, in July of 2015, a 100% matching donor was identified in Madison, Wisconsin. Tancrede received his transplant on July 29, 2015.
Due to complications, he spent almost 2 years in the hospital. His body needed an additional transplant of lymphocytes, which the donor agreed to, without hesitation.
Tancrede is now 13 years old and despite his illness he continues to lead a normal life. Although still in recovery, taking an abundant amount of medicines, antibiotics, monthly chemotherapy and blood treatments, he is persistent on keeping his above average attendance in school. Tancrede has a knack for learning. He speaks four languages, is socially conscious, and has his own YouTube channel.
His fathers insist that none of this would be possible with the Icla da Silva Foundation and his life-saving bone marrow donor.