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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.

DONATE TODAY

Written by: Bret Itskowitch

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One-Year-Old Boy Receives His Life-Saving Transplant

We 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.

please donate

Written by: Bret Itskowitch

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Join Us for Something Different – A Virtual Wine Tasting with Live Music

 

 

 

 

 

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) *Your Package must be ordered by May 16, 2022.

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.

JOIN US

Together we will make a difference.

Thank you to our sponsor.

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Fulfilling Katie’s Barrier to Treatment

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.

make a donation

If you are a patient waiting for a bone marrow transplant, and in need of support, please submit a request

submit a request

Thanks for reading.

Written by: Bret Itskowitch

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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!

MAKE A DONATION

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.

PATIENT REGISTRATION

Together we are helping more patients and saving more lives.

 

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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.

Read the story

 

 

 

 

 

 

Photo Credit: Natalia Torres

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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.

VOLUNTEEr with us

Written by Andres Lopez

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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.

join tODAY – fight for frazee

After completing a swab kit, you will be added to the Be The Match Registry. Your odds of getting asked to donate blood stem cells are low, which is why Julee is working so hard to keep adding more potential donors to the registry.

Thank You Julee

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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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