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Donating Stem Cells: A Once in a Lifetime Opportunity

Finding a stem cell donor who matches a patient with blood cancer is rare.

Some donors wait years before they are called on to donate their stem cells. Some never get called. They miss the opportunity to save a life.

Unfortunately, this means that some patients may never find their match.

The Icla da Silva Foundation recruits stem cell donors for the Be The Match registry. The more donors we add to the registry, the greater the likelihood of finding a cure for a patient.

Pace University Setters Join the Registry

In March, just before the pandemic caused social distancing, we organized a recruitment drive with the Pace University football team The Setters, under the leadership of coach Andy Rondeau.

On that day in March, freshman starter Miles Mendez joined the registry. He joined along with 50 of his teammates.

Miles Matches a Patient

In April, barely one month after joining the registry, Miles Mendez received a call that he was a match for a 57-year-old woman with leukemia.

After discussing it with his parents and his coach, Miles said yes to donating his stem cells.

He said yes to saving a person’s life.

A stem cell transplant is the only cure for life-threatening diseases like leukemia, lymphoma, and sickle cell. On average, only 1 in every 460 people who register, will end up matching a patient in need of a transplant. It is quite rare.

What Happens After Donating

Miles doesn’t know the patient who received his stem cells.

The identity of a patient and their matching donor are kept confidential. After an 18-month waiting period, once the transplant is deemed successful, they are given the opportunity to share information with each other. They may eventually meet.

We hope Miles gets the chance to meet the person he saved. Since he joined the registry through Icla da Silva, we would be honored to invite him and the patient to meet on stage at one of our annual Hope Gala dinners where donor/patient meetings are the main event. (Read about last years Hope Gala)

Thank You Miles 

We are thankful that Miles Mendez made a commitment to save a life by joining the registry. We are grateful that he said yes when he received the call to donate his stem cells.

Everyone is proud of his selfless, life-saving action.

Coach Andy Rondeau remarked, “this is awesome, what a life experience for the team.” The coach says it’s a tradition for the teams that he has coached to sign up with Be the Match.

Miles encourages others to sign up for programs that make a difference. “If you have a chance to save a life,” said Mendez, “just do it. It’s worth it.”

How You Can Save a Life

Start by joining the registry. Click the link below to set-up an account and answer some basic questions. A swab kit will be mailed to your home. After swabbing the inside of your cheeks and returning the kit in the prepaid envelope, you will be included in patient searches.

If you eventually end up matching a patient in need, you may save a life. It will be a once in a lifetime opportunity.

Please join. Do it in honor of Miles and the Pace University Setters.

Together, we will save more lives.

join the registry

To read more about Miles and his transplant, click this link from Event-NewsEnterprise.

Written by: Bret Itskowitch

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The UCF Challenge: Pledging to Save a Life

The UCF Challenge: Pledging to Save a Life

Throughout the month of April, fraternities, sororities and mentorship clubs at the University of Central Florida are challenging each other. Together with their brothers and sisters, they are pledging to “Save a Life” by joining the Be The Match bone marrow registry.

Background

The Icla da Silva Foundation is the largest recruitment center for the Be The Match Registry. We add potential stem cell donors to the registry. A stem cell transplant is the only cure for rare diseases like Sickle Cell, and blood cancers like Leukemia and Lymphoma.

The difficulty lies in finding a donor who ‘matches’ the genetic makeup of a patient.

The Diversity Challenge

A challenge for the registry is consistently maintaining an active network of committed donors. This is especially true for donors who are ethnically diverse. Blood cancer patients from every ethnic minority are under-represented on the national registry. There simply aren’t enough diverse donors included on the registry.

We are working to change this.

A White patient has a 77% chance of finding a matching donor on the registry. But Hispanic patients only have a 46% chance. Asians have a 41% chance and African American patients only have a 23% chance of finding a matching donor. This means that 3 out of 4 Black patients may not survive their disease because they can’t find a matching donor.

The COVID-19 Challenge

There are (3) requirements for joining the national registry. We need to assure that you are: (1) healthy, (2) aged between 18 – 44, and that you are (3) committed to saying ‘”yes” if you match a patient in need. Meeting all three requirements represents the greatest chance for a successful transplant.

Historically, we have recruited potential donors at ‘live’ drives. We held these drives at university campuses across the country because it represented the best chance at meeting all three requirements.

Since the onset of COVID-19, all live drives have been cancelled.

But lives are at stake. Patients are still searching for a donor. We cannot stop adding committed donors. As a result, our recruitment has gone social. We are using social media to educate potential donors and keep the registry active.

The UCF Challenge

The following organizations at the University of Central Florida (UCF) are challenging their members, and each other, to Pledge to Save a Life throughout the month of April…and we are grateful.

Delta Epsilon Psi Fraternity
Asian Student Association at UCF
Delta Phi Omega Sorority
The Diversified Greek Council at UCF
Mu Sigma Upsilon Sorority
Crown to Crown Girls Mentorship

These active and engaged students will be using their social media platforms to help us recruit more donors to the Be The Match registry. We will share their videos and activity on our social pages in the coming days and weeks.

Help them succeed in their efforts. Join the registry on their behalf.

pledge to save a life

Watch our Facebook page for the first video installment from the brothers of Delta Epsilon Psi at UCF.

Written by: Bret Itskowitch

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We Have Some Good News! But It’s Not Enough

The Icla da Silva Foundation has been saving lives for many years. In the beginning, we had a small footprint, adding 5000 people per year to the Be The Match Bone Marrow Registry.

We have grown considerably. In the next year, we hope to pass the half-million mark, adding more than 500,000 potential life-savers to the registry.


Some Good News

In October, we arranged for two cancer survivors to meet their life-saving donors for the first time. They each met onstage during our Hope Gala in NYC:

Marta Sanchez registered through Icla da Silva 11 years ago. Thankfully, when she finally received the call that she matched a patient in need, she said yes. Marta and Giliani Lacayo met for the first time on stage at our Hope Gala (watch video).

 

 

Stephanie Cisne had been diagnosed with an aggressive form of Leukemia. We had worked with Stephanie’s family during their search for a matching transplant several years ago. Stephanie got to meet her life-saving donor Crystl for the first time (watch video).

 

 

In November, we were notified that 7 people who joined the registry through Icla da Silva, transplanted their bone marrow or stem cells to patients suffering from life-threatening diseases.

Each one of them is a life-saver.


But It’s Not Enough

We are proud of the work that we do, but it isn’t enough. We continue to work with so many patients and their families who are still searching for their own life-saving match.

Still Searching

 

Asaya’s parents have been searching for a match since he was 2 months old. Asaya turned 8 in July and there is still no match for Asaya.

 

Julian’s family has been searching the registry for 5 years. Three donors were identified, but each one of them said no when the call was made that they were a match. There is no committed donor for Julian.

 

 

Veronica’s family has been searching for almost 3 years. There is still no match for Veronica.

 

 

Currently, there are no matches for so many patients.

Not yet anyway.


You Can Help

We have to keep moving forward. We must do everything we can to grow the registry in order to save more lives.

But we need your assistance. We cannot do it without you.

There are two ways you can help us add more donors to the registry.

We have been engaging college campuses across the country. Since the registry is underrepresented across all ethnic minorities, we are focusing on Universities with diverse enrollment.

#1 Introduce Us

You can help us by leveraging any contacts you may have with University Leadership, as well as Social, Professional, or Service-Oriented Sororities and Fraternities.

We are meeting with Deans, Professors and other on-campus Leaders in order to organize larger recruitment drives among the student body. Send us an email (Airam@icla.org) or fill out a host form with your ideas.

host a drive

#2 Sponsor Us

You can also assist our efforts with a financial donation. Help us sponsor ‘lunch and learns’ on campus. These gatherings provide the opportunity to share our stories and engage potential life-savers, adding more donors to the registry.

make a donation

Thanks for reading. We are committed to saving as many lives as possible, and with your help, we will give more patients hope for their cure.

Your support will help us save more lives.

Written by: Bret Itskowitch

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She 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 their 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 didnlt 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

 

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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.


The Meeting

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 Itskowitch

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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 registry

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Still Smiling – David Gonzales Shares His Story

David Gonzales shares his story from Centro Church in Dallas, Texas.

David has Hodgkin’s Lymphoma, recurring 4 times in his life. He has undergone 415 days of chemo and radiation and he is currently in remission.

Despite his disease, he still smiles. He is living his life and he continues to support his community by holding bone marrow drives with the Icla da Silva Foundation.

Hispanic and Latino persons who are suffering from various blood cancers, only have a 23% chance of finding a matching donor. A 23% chance at a life-saving cure.

There simply aren’t enough Latinos included on the registry.

A matching bone marrow or stem cell donor is the only cure for many patients.

Together, we can increase the likelihood of finding a match by asking as many people as possible to join the Be The Match registry.

join the registry

Watch the short video below where Dave shares his story. After you join the registry, share with your family and friends so they may also join the registry. Help us change the odds…help us save more lives.

Written by Bret Itskowitch, special thanks to Andres David Lopez for shooting and editing.

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Join Us for the Icla da Silva 2019 Hope Gala

 

BREAKING NEWS: On October 16th, 2019, the Icla da Silva Foundation will hold its 27th annual Hope Gala celebration. The event promises to be an extraordinary evening of dining and dancing while raising funds to support our mission.

Held annually, the Hope Gala celebrates the Foundation’s achievements for the year in fighting leukemia and other diseases treatable by bone marrow transplants. The evening’s highlight is an emotional first-time meeting between a former patient and their life-saving bone marrow donor.

Details

Please join us, rsvp here:

RSVP for the Hope gala

Honoring

This year, the Hope Gala is honoring Dr. Lawrence Itskowitch.  As a founding board member, Dr. Itskowitch has been with the Foundation since day one. He will share some of his experiences working with the foundation at its onset, and meeting Icla prior to her death from leukemia in 1992.

Grateful

The Icla da Silva Foundation is extremely grateful to the Hope Gala Host Committee and Co-Chairs, Mrs. Tanae & Mr. Claudio Braz Ferro, and Mrs. Renata & Mr. Claudio Garcia.

Their gracious support enables us to move forward in our mission of both saving lives by recruiting bone marrow donors and providing support services to children and adults with leukemia and other diseases treatable by marrow transplants.

Join Us

We hope to see you on October 16th. RSVP today! Together we will save more lives.

 

About Icla da Silva
The Icla da Silva Foundation is the largest recruitment center for the Be The Match Registry in the United States. The Foundation recruits over 38,000 potential bone marrow donors every year, with a strong focus on minority communities.

The Icla da Silva Foundation was established in 1992, in memory of the 13-year-old Brazilian girl named Icla da Silva. After two years of fighting leukemia, Icla passed away in New York City, where she came hoping to get her life-saving treatment: a bone marrow transplant. The young girl never found a matching donor.

The mission of the Icla da Silva Foundation is to save lives by recruiting bone marrow donors and to provide support services to children and adults with leukemia and other diseases treatable by marrow transplants. The Icla da Silva Foundation is a nonprofit organization under section 501(c) 3 of the IRS Code.
www.icla.org

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Shortage of Bone Marrow Donors a Health Challenge for Minority Communities – NBCNews

7-year-old Asaya Bullock has a rare immune system disease, and the only cure is a bone marrow transplant. His parents have been searching for five years with no luck and are trying to raise awareness and encourage more African-American donors. Out of some 10 million potential bone marrow donors in the U.S., fewer than 1 million are African-American.

View the segment on NBC News.

How can you help Asaya?

join the registry

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How 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 story

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