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Reina Martinez Hernandez was not yet 2-years-old when she was diagnosed with Juvenile Myelomonocytic Leukemia (JMML). JMML is a rare and aggressive blood cancer that affects young children.
After a cycle of chemotherapy, Reina and her family relocated from South Carolina to receive treatment at the Children’s Hospital at Montefiore in the Bronx, NY.
She was immediately admitted to the hospital in January of 2022.
Her only chance for a cure was a bone marrow transplant. Unfortunately, she has no siblings and no match was found in the worldwide bone marrow registries.
Removing Barriers to Find a Match
The transplant team at Montefiore reached out to the Icla da Silva Foundation to provide financial assistance for HLA testing. They needed to see which parent was the best match for a Haploidentical Bone Marrow Transplant.
A haploidentical transplant is a breakthrough process that uses cells from a half-matched donor to replace cancerous cells. The donor is typically a family member.
With support from the Icla da Silva Foundation, both parents were tested. Her mom was identified as the best match.
On April 11, 2022, Reina received a bone marrow transplant and is doing amazingly well.
More Barriers
Being so far from home to receive this breakthrough treatment has resulted in critical financial stress for the family. Thanks to the Icla da Silva Foundation’s generous supporters, the Foundation was able to provide Reina’s family with two months of lodging during her transplant.
We are happy to see the beautiful smile on Reina’s face.
The Icla da Silva Foundation continues to remain engaged with the family while they wait to return home with their healthy baby girl.
Thanks for reading. Your gift can help support more patients like Reina.
How A Single Mother Keeps Hope Alive
Samuel is an 11-year-old boy from Astoria, in Queens, New York. He loves to read and play video games.
Since birth, Samuel has lived with a low platelet count.
Low platelets are caused by a genetic mutation. A low count is less than 150,000 platelets per microliter. Sammy’s count has usually been around 90,000.
In April 2020, Sammy was tired and suffered from a fever. His mom Alessandra was nervous. She was concerned about covid, so she brought him to the hospital. They diagnosed strep throat and prescribed antibiotics. She thought that was a good thing.
But he didn’t get better.
His pediatrician diagnosed mononucleosis and prescribed another antibiotic. It didn’t help.
Sammy’s platelet count had gone down to 25,000.
A Mothers Healthcare Journey Begins
Alessandra took Sammy to five different hospitals in New York City, Washington DC, and Boston. They were all large and well respected. She even called her personal doctor in Brazil.
They continued to discover abnormalities in his blood, but the findings were not conclusive. Bone marrow failure was suggested as the diagnosis.
Alessandra wasn’t sure what her next step should be.
She is a strong, intelligent, and confident woman. A single mother to two boys. She would not give up. She kept asking for more information, another opinion.
The doctors have recommended a bone marrow transplant.
Searching for a Donor
Alessandra’s next step is to find a matching donor for her son. Since both she and her older son have the recessive gene, they cannot donate their blood stem cells.
The doctors have searched the national registry, but there is no match for Sammy.
Not yet.
Because of his Brazilian heritage, the chances of finding a matching donor are low. There are simply fewer registered donors who would potentially match Samuel.
The Icla da Silva Foundation
Alessandra remembered the Icla da Silva Foundation as an organization that helps to remove barriers for patients who need a bone marrow or cord blood transplant. She learned about the foundation many years ago when a representative spoke at her church in Queens.
Alessandra contacted Airam at the Foundation. He listened to her story, understood her challenges, and answered her questions. He recommended some strategies to add potential donors and introduced her to the team at Be the Match.
We helped remove the initial barriers that every patient goes through, by providing information about the process, and orientation towards a life-saving solution. The goal is to explain the challenges while reinvigorating hope.
Their search for a matching donor began over the July 4th weekend.
Alessandra is very hopeful, “tell me what you need me to do. Should I post on social media, meet with the local press, talk to community leaders?”
We answered her with, “yes, yes, and definitely yes.”
Our mission is to remove barriers to treatment for patients who require a life-saving bone marrow transplant. We are helping Alessandra and her son with their search for a potential donor.
We are spreading the word and hoping a match will be found soon. A volunteer group is being formed through the Icla da Silva Foundation to expand support for Alessandra and Sammy in their search for a donor.
How is Samuel?
Last week, Sammy’s platelet count was 14,000. He is tired, and he has difficulty going up a flight of stairs. He bruises easily. Alessandra tells us, “it’s obvious when his platelets get low, he gets petechiae.” These are red marks on his body, which means he is bleeding into his skin.
Alessandra remains strong, “we will get through this, we will find a solution.”
To JOIN THE REGISTRY you need to be between the ages of 18-40, in good health, and willing to donate to any patient in need. Click the link below or text: Swab4Sammy to: 61474 and request a swab kit be mailed to your home.
If you have already joined the registry and want to help firther, please click the Volunteer button below and register to join our Zoom call.
Together we will save more lives.
Written by: Bret Itskowitch
When She Said, “This Patient Was Relying on Me!” We Knew Exactly What She Meant
This February, Mayra Lopez received a strange text message. It read, “You might be a match, it’s important that you call us.”
Mayra had almost forgotten that she joined the Be the Match registry three years ago, back in February of 2019.
She included herself as a potential donor after being recruited by her sister Karla, a former employee of the Icla da Silva Foundation.
When asked why she joined, Mayra told us that her sister explained how rare it was to find a donor within the Hispanic community.
“Life is so fragile, and I will do whatever I can for my community.”
When Mayra called back after receiving the text, the only information she was given about the patient was that he was a 22-year-old male, and probably of Hispanic descent.
After hearing that, she knew he didn’t have a choice, and neither did she.
“This patient was relying on me!”
She couldn’t just ignore this patient…Mayra said yes to donating her blood stem cells.
We asked her about the donation process. She said she was surprised at how easy it was. “It was so much easier than I expected. No pain, nothing. It took about 4 hours and I napped most of the time.”
In the hours between having breakfast and lunch at the hospital, Mayra saved the life of someone she did not know by donating her blood stem cells.
When we asked what she thought about that, Mayra insisted, “it was a once in a lifetime opportunity”. She told us, “I was excited because something good was happening. A life was saved…it’s a beautiful thing.”
We thanked Mayra for saving a life and explained how the Icla da Silva Foundation had recently expanded our mission to provide emotional, logistical, and financial support to remove barriers to treatment.
We told Mayra, “Just like you, so many patients are relying on us”. She let us know that she understood, and she was excited by our cause. “Resources are limited, and so many people are afraid to put themselves out there. Thanks for everything you do.”
Thank you, Mayra. Thanks for your support, and thank you for saving someone’s life.
Together we can make a difference for patients in need of a bone marrow or cord blood transplant. Together we will save more lives.
Written by: Bret Itskowitch
One-Year-Old Boy Receives His Life-Saving TransplantWe were able to remove several barriers during his journey to a cure.
John was diagnosed with leukemia as a 2-month-old baby.
Obviously, his parents were concerned. They needed help understanding all the information about options and challenges. They weren’t sure what to expect or how to navigate the process.
They wanted the details in plain language.
The Icla da Silva Foundation helped John’s family overcome their first barrier.
With so much time traveling to receive treatments, and with so many tests and appointments scheduled, it was impossible for them to keep a regular work schedule. The family had a hard time making ends meet.
This was their second barrier.
Thanks to our generous supporters, we were able to provide funding to assist John’s family with housing needs.
By removing this barrier, his family was able to focus on treatment.
We are happy to report that John recently received a cord blood transplant. His body has accepted the new cells.
(watch a :30 video of his transplant)
We wish this little boy a happy, healthy life; a life that every child deserves.
Our supporters played an important role to ensure that another life was saved.
If you haven’t donated recently, please consider making a gift to help more patient families like John and his parents.
Together, we will continue to make a difference.
Written by: Bret Itskowitch
We invite you to a truly unique experience! We are launching our first ever Virtual Music and Wine Tasting event.
This event combines three wines from around the world, pairs them with luxurious cheeses and sweet treats, and presents them live via a video link with world-class musicians and storied curation.
The evening promises to be extraordinary!
Join us on Thursday, June 16 from 6:30 – 8:00 PM (Eastern Time)
There are two packages available:
Package #1 – receive 3 bottles of wine, paired with cheeses and sweets mailed to your home. This package is all-inclusive and accommodates 2-4 people. Log on and enjoy the live tasting with us.
Package #2 – receive the list of hand-selected wines, along with the recommended cheeses and sweet treats, and purchase the items locally. Invite some friends to your tasting, then log on and enjoy live music and curation while supporting our mission.
This tasting is made possible and hosted by our Board Member, Kala Maxym, the founder of Five Senses Tasting.
Proceeds will help us remove barriers for patients in need of a bone marrow or cord blood transplant.
Join us for an interesting evening of music, wine, and curation while supporting the mission of the Icla da Silva Foundation.
Click the link for more information.
Together we will make a difference.
Thank you to our sponsor.
We received a heartfelt message from a blood cancer patient last week. It read simply, “You are the answer to my prayer.”
The message was sent to us by Katie. She is a single mom, diagnosed with leukemia whose only cure is a bone marrow transplant.
For 29 years, we have supported patients who require a bone marrow transplant. We are very familiar with the challenges and barriers to receiving a life–saving transplant. It usually begins with the search for a matching donor.
Katie already had a matching donor, and she was ready for her transplant. But the transplant team would not schedule her until she could make arrangements for a Caregiver.
A Caregiver was required to assist her for an extended period after the transplant.
Katie’s insurance, like most, did not cover the expense of a Caregiver.
This was Katie’s barrier.
She has been unable to work since her diagnosis and she required a little support. Fortunately, the Icla da Silva Foundation provided Katie with the financial support she needed to arrange for a Caregiver.
Katie is scheduled to receive her transplant.
The Icla da Silva Foundation helps patients in need of a bone marrow transplant by removing barriers. We do this by providing emotional, logistical, and critical financial support. Our goal is to ensure that more patients will receive their transplants.
For patients demonstrating financial need, we help with expenses that usually aren’t covered by insurance and often prohibit treatment. These include transportation, temporary housing, and caregiver expenses while in treatment.
You can help us save more lives! Consider making a financial donation to support our mission. Together we will help more patients and save more lives.
If you are a patient waiting for a bone marrow transplant, and in need of support, please submit a request
Thanks for reading.
Written by: Bret Itskowitch
Expanding Our Mission: Removing Barriers to Treatment
Expanding Our Mission: Removing Barriers
We recently expanded our life-saving mission to put greater focus on removing barriers to treatment. For the past 29 years, the Icla da Silva Foundation has helped patients in need of a bone marrow or cord blood transplant by recruiting potential donors. In 2022, we are focused on providing emotional, logistical, and financial support for more patients in need of a bone marrow transplant.
For patients demonstrating financial need, our IclaCares program is awarding grants that are specific to the needs of transplant patients.
⇒ We are helping more patients receive their transplants.
Our Mission
The Icla da Silva Foundation saves lives of patients with diseases whose only cure is a bone marrow or cord blood transplant by providing emotional, logistical, and financial support to remove barriers to treatment.
A life-threatening disease, like blood cancer or sickle cell, is never expected. It presents an unthinkable challenge to the entire family. As a result, the Icla da Silva Foundation has always provided patients and their families with necessary emotional and logistical support. But for patients who demonstrate a financial need, we are putting a greater focus on enabling financial assistance.
IclaCares – Removing Barriers
Even after a matching bone marrow donor is found, there are many costs associated with a transplant that aren’t covered by insurance. For many patients, transplants and treatments are not available close to home. Through our IclaCares program, we are helping more patients afford expenses like transportation to a specialty medical center, housing, and even family meals while a child is in treatment.
We are also assisting with caretaker expenses. A caretaker is required by most transplant teams but rarely covered by insurance providers.
⇒ We are making it easier for more patients to receive their transplants.
You can help us support more patients in need. Please consider making a tax-deductible donation using the button below. Thank you!
Are you a patient scheduled to receive a bone marrow transplant? Are you in need of support? Please click our patient registration and submit a request.
Together we are helping more patients and saving more lives.
My Journey as a Hispanic Bone Marrow Donor: Reporter’s Notebook
The most powerful stories are the personal ones. Thank you to Armando Garcia and ABCNews for sharing Armando’s personal experience as a bone marrow donor.
This story has a dramatic payoff at the end, when we see our own Alfredo meeting Armando, always smiling and hoping to find his own matching donor.
Thank you for sharing your healing power.
Photo Credit: Natalia Torres
We Are Grateful for Anjana Persuad, a High School Junior from Queens, NY“There is no substitute for hard work”
– Thomas Jefferson, Founding Father and 3rd President of the United States
“There is no replacement for passionate youth”
– Airam da Silva, President, Icla da Silva Foundation
When Anjana Persaud first learned about Be The Match, she became passionately committed to volunteering with us to help us save more lives.
Research, Advocacy, Community Outreach
A junior at Thomas A. Edison Career and Technical Education High School in Queens, New York, Anjana won first place at the New York State HOSA Spring Leadership Conference for Human Growth and Development.
Her research investigated using social media to address racial disparities on bone marrow registries.
She will be competing in June with her research at HOSA’s International Leadership Conference!
Fundraising
Anjana is also a member of the HOSA team at Thomas A. Edison C.T.E. High School that raised more than $3,000 as part of the HOSA national service project!
Commitment
Anjana recently shared her passion about the Be The Match disparity with her mentor at Apex for the Youth, Vicky Yang. Together they will work to increase awareness about blood cancers and the National Marrow Donor Program to the Asian American community in New York City.
Dedication
Anjana will also be participating in the New York Summer Youth Employment Program group with Dr. Savitzky from her High School Thomas A. Edison C.T.E. We hope they consider working with us to further extend awareness about the importance of saving lives by including more diversity on the national Be the Match registry.
Passion
Finally, Anjana has launched her own campaign on Instagram (@swab4ny). She continues to raise awareness about the importance of signing up to become a potential stem cell donor!
Thank you, Anjana, for everything you have done!
We know that we haven’t heard the last of you.
If you would like to volunteer with us, help raise awareness, and save more lives, please click the link below.
Written by Andres Lopez
Pennsylvania Teen Raises Awareness in Honor of Her Father’s Fight with Leukemia
Rick Frazee with his daughter Julee
By Andres David Lopez
Rick Frazee is known for using different vehicles in his trucking company fleet to plow snow for his neighbors in Addison, Pa. This year, his fight with acute myeloid leukemia and two bouts of pneumonia have sidelined him.
“He would be up all day and night plowing,” said Julee, his daughter. “He would plow out the fire department, the little grocery store we have out here, the gas station … that’s been really hard on him right now, not being able to help everybody out.”
While helping to care for her father, Julee, 19, is also advocating for other families fighting blood cancers and blood illnesses. She volunteers as a digital ambassador with Be The Match and the Icla da Silva Foundation, two nonprofit organizations that help facilitate blood stem cell transplants.
A student at West Virginia University studying exercise physiology, Julee has raised awareness of the need for potential blood stem cell donors. So far, she has inspired 35 people to sign up. “Her efforts have made her a top advocate for Be The Match”, said Vanessa Ibarra, a community engagement specialist with the Icla da Silva Foundation.
“Introducing people to the importance of signing up as blood stem cell donors to help patients fighting blood cancers is difficult,” Ibarra said. “But Julee has been successful because she speaks from the heart about her father’s journey with leukemia. She talks about how Be The Match has given her family hope that he will beat it.”
Rick Frazee, 57, spent this summer in the hospital — at one point, he was isolated for 65 days away from his family — while undergoing chemotherapy for leukemia and treatment for pneumonia.
He is back home now. His wife and children help care for him while his doctors plan and prepare him for a lifesaving stem cell transplant.
After testing, doctors found that nobody in his family could serve as his donor. Thankfully, they found three perfect matches for him on the Be The Match Registry.
A blood stem cell transplant is the preferred course of treatment for many patients who are fighting blood cancers. Be The Match has helped facilitate more than 100,000 unrelated donor transplants since 1987. “The Icla da Silva Foundation is the largest recruitment center for Be The Match and specializes in fighting racial disparities in blood stem cell transplants”, says Ibarra.
More than 22 million Americans have registered with Be The Match as potential donors, but a match is not guaranteed for patients. Every year, thousands of patients across the country who need a transplant, lack a matching donor. That’s why constantly signing up new people between 18-40 as potential donors is so important.
Blood cancer patients of Caucasian descent only have a 77% chance of finding a matching donor on the Be The Match Registry. But Rick Frazee’s doctors have three perfect donor matches to choose from for his transplant.
“The doctors said they had never seen this many perfect matches this quickly,” Julee said. “And that was because of the Be The Match Registry.”
“Following in his footsteps”
Rick Frazee launched his trucking business in 1997 with one truck. Eventually, R.W. Frazee Trucking and Excavating grew to running 12 trucks as part of its fleet.
“For a small business in a small town that is pretty great,” Julee said. “We had excavating on the side. We had a wood processor. We were selling tons and tons of firewood. So, he’s a very smart businessman. He never went to college. He knew exactly what he wanted to do and he made his dreamwork for his family.”
The company has been downsizing since 2019 when Rick Frazee’s doctors told him he was in danger of developing leukemia.
Julee credits her mother for her strength in holding the family and company together.
“She is the one getting up at 5 a.m. every day, driving to the hospital and then the cancer clinic,” Julee said. “She is also staying up late doing the payroll, and invoices, and doing what she has to for the business…just trying to keep the family together. She is unbreakable.”
While Rick is currently fighting pneumonia, his wife Jamie is also responsible for making sure he receives his antibiotics, a process that can take as long as five hours.
“He has to get bags of saline,” Julee said, “bags of antibiotics, different kinds of flushes. And I’ve learned how to do all that, but my mom is still his main caregiver.”
“Fortunately, the family has felt love and support from their community”, Julee said. At a spaghetti dinner hosted to benefit her father, Julee spoke with many people who had received acts of kindness from him throughout the years. They wanted to know how they could give back.
“Owning a business, we’ve been very blessed over the years and he always wanted to help other people,” Julee said. “A large part of why I’m so passionate about health care and helping people is just from following in his footsteps.”
In May, Julee learned of the need for people to advocate for Be The Match. By sharing her family’s story, she hopes to inspire people to sign up as potential donors. She now has an answer for people who ask how they could help her father.
“You can support my family by signing up for Be The Match,” she says. “It’s free. It takes five minutes. And it’s easy.”
Through social media, Julee has reached thousands of people with her message and she has walked dozens through the process of signing up.
In November, doctors explained to the family that Rick Frazee was no longer responding to chemotherapy. This complicates his receiving the blood stem cell transplant that he needs. He is now receiving antibody therapy to continue fighting his cancer. And because his body is not producing enough blood or platelets, he travels three times a week to Uniontown Hospital for transfusions.
“That’s why he is so tired,” Julee said. “The cancer and the disease is so prominent in his body and his blood.”
Her father is dependent on weekly transfusions. This further underscores the importance for people to donate blood and platelets.
“I just never thought about how crucial it was,” Julee said. “It’s very needed for sure and I know because of COVID the American Red Cross is unable to reach out to people and is hurting for supplies.”
Julee’s goal in advocating for the Be The Match Registry is for at least 50 people to sign up as potential blood stem cell donors in honor of her father’s fight with leukemia.
“It has been over a year fighting this,” she said. “I just knew I wanted to get as many people on the registry as I could.”
To support Rick Frazee and his family in their campaign to add potential lifesaving donors to the Be The Match Registry, visit join.bethematch.org/fightforfrazee or text “FightForFrazee” (all one word) to 61474. Follow the link to register as a potential donor.
After completing a swab kit, you will be added to the Be The Match Registry. Your odds of getting asked to donate blood stem cells are low, which is why Julee is working so hard to keep adding more potential donors to the registry.
Thank You Julee
