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PortugueseA Social Worker Describes Her Experience with Patient Families who need financial assistance from the Icla da Silva Foundation
Cary, North Carolina
Tara McAteer is a clinical social worker with 18 years of experience. She specializes in supporting patients and families with acute and chronic medical conditions.
She recently shared her experience working with patients who needed financial assistance while in treatment to receive a life-saving bone marrow transplant. Below is Tara’s story.
The Patient Experience
Needless to say, life completely changes once you have a child diagnosed with a life-threatening disease, and they need to prepare for a bone marrow transplant.
The change impacts every single aspect of life for the patient, their parents, and even their siblings.
Imagine your child going through months of treatment and being told she needs more treatment or a different treatment.
Then you learn that a bone marrow transplant is the only thing that can potentially save or extend her life. It’s a frightening situation.
The families I have worked with move forward with courage and determination, but it’s impossible for anyone to predict the journey they will endure.
No one can say how many months their child will be in isolation, or the frequency of emergency room visits.
Nobody can estimate the number of readmissions or the exact length of time they will have to spend in post-transplant follow-up in the outpatient clinic.
“How Will I Make This Work?”
Every family has the same painful questions.
Will our insurance cover it? How much longer can I stay out of work? We don’t have any more savings. I already lost my job, how will our family survive?
What about my other children? Who is going to stay home with them, help them with homework, bring them to school?
This has gone on too long – how will I make this work?
Families who were financially stable before diagnosis, may not be in the same position after so many months or even years of treatment.
Many of my families were already experiencing financial hardship before their diagnosis.
The Icla da Silva Foundation
This is where the Icla da Silva Foundation comes into the picture. Their application is quick and completed in coordination with a transplant social worker like me.
Once approved, the assistance is immediate.
Most of the families I referred for support were being threatened with eviction or being evicted. Some had homes that were already in foreclosure.
What is so special about this organization is that part of the criteria for eligibility is treatment-based. Help is available to children scheduled to receive a transplant regardless of their diagnoses. They are helping patients with cancer, immunodeficiencies, genetic conditions, hematological illnesses, sickle cell disease, the list goes on.
In addition to financial support, the emotional impact of receiving assistance from the Icla da Silva Foundation is indescribable for most families. It allows the patient’s family to catch a breath, even if just for a moment before they need to redirect their attention to the next medical issue or the fear of what’s still to come.
The gratitude they feel is something that stays with them forever.
You are Making a Difference
No family can do it alone. No social worker can do it without the support of an organization like the Icla Da Silva Foundation.
Thank you to all of your generous donors! You are all making a difference.
Sincerely,
Tara McAteer, LCSW, ACSW, OSW-C
Thanks to Tara for sharing her perspective and experience. We are grateful for the work that she does.
Please consider making a donation to support a patient’s family on their difficult path to receive a bone marrow transplant. You will help keep food on the table or a roof over their head while a patient goes through treatment and transplant.
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
Removing 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.
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
Do You Remember Alfredo?Even though a donor hasn’t been found, Alfredo is still smiling.
He is the little boy from Chicago with a rare blood disorder. We have been helping him search for a matching blood stem cell donor.
He has been searching the registry for 5 years.
We recently ran a Facebook campaign about Alfredo and many people expressed an interest in helping.
Almost 200 people signed up online to become potential donors.
Although he still hasn’t found a matching donor, Alfredo seems to be doing OK. He was excited to go back to school, he started the 4th grade in September.
Would you be interested in helping us support more patients like Alfredo? Even the smallest donation will help blood cancer patients during their search and treatment.
Your gift gives patients and their families more hope for a positive outcome. It allows them to focus on treatment rather than bills.
Please support the Icla da Silva Foundation and our mission to save more lives.
#Giving Tuesday – Every Contribution Gives Hope
The Icla Da Silva Foundation has been helping patients with blood cancers, and adding potential donors to the bone marrow registry, for 26 years. We started in memory of my sister Icla, who was unable to find the match that she needed to survive.
In her honor, every year the Icla Da Silva Foundation adds 38,000 new members to the registry. Potential life savers, with a strong focus on communities from diverse ethnic backgrounds.
When a family learns that a loved one has been diagnosed with a rare disease or blood cancer, and is in need of a bone marrow transplant, the fear can be horribly daunting. Our goal is to offer these patients and their families hope for a second chance, hope for a life-saving stem cell or bone marrow match.
One of our patients, Julian Morales, has been searching for his match since he was three years old. Now seven, Julian smiles when he speaks about the day he will finally be able to go to a water park with his family, or play outside with his sister, or simply enjoy a single nights rest without pain or discomfort.
Julian was born with a rare genetic disorder, Dyskeratosis Congenita (DKC). His bone marrow does not produce enough blood cells, and his immune system is severely compromised. The team at Icla has been working to find a bone marrow match for Julian by hosting drives in diverse communities.
Patients with Hispanic or Latino heritage only have a 46% percent chance of finding a matching donor on the registry. Those with mixed ethnicities have an even lower probability of finding their match. Julian is of Honduran and Guatemalan descent, and his need for a life saving match grows with every day. With the support of people like you, we continue the search for his match.
There are many deserving and inspiring Foundations to support on this #Giving Tuesday. This year we hope you think of the Icla da Silva Foundation, of Julian Morales, and of the thousands of children in need of their perfect match. Contributions like yours give hope to the patients, their families, and the many friends in their community.
Thank you for your generosity.
Thank you for being a part of our family.
Airam Da Silva
The Icla da Silva Foundation is proud to announce Jennifer Jones Austin as Master of Ceremonies at the 2018 Hope Gala. The Gala event, taking place on October 17th in NYC is the largest fundraiser for Icla da Silva.
Jennifer Jones Austin, Esq.
Jennifer Jones Austin is a wife, mother, lawyer and family advocate. She is CEO and Executive Director of the Federation of Protestant Welfare Agencies (FPWA), an anti-poverty, policy and advocacy organization with 170 member human services agencies operating throughout New York City. Prior to joining FPWA, Ms. Jones Austin served as Senior Vice President of United Way NYC, Family Services Coordinator for Mayor Bloomberg, Deputy Commissioner for the NYC Administration for Children’s Services, Civil Rights Deputy Bureau Chief for Attorney General Eliot Spitzer, and Vice President for LearnNow/Edison Schools Inc. She currently is a Board Member of the National Action Network, the New York Blood Center, the NYC Board of Correction, and the Fund for Public Housing.
Leukemia Survivor
She is also a leukemia survivor, and the author of Consider It Pure Joy. The book is an account of her battle with leukemia, and her race against time in the search for a cure. Together with family and friends, Jennifer Jones Austin led a campaign that added more than 13,000 potential bone marrow donors to the registry. Those donors added much needed hope for the many patients fighting this deadly disease.
The Icla da Silva Foundation assisted Jennifer Jones Austin during her search. We are grateful that she, and her husband Shawn Austin, who serves as Chairman on the Board of Trustees for the Icla da Silva Foundation, stand with us and continue their support of our mission.
Please join us for a night to remember.
The 2018 Hope Gala takes place on Wednesday evening, October 17th at 6:30 PM. The dinner and dance is black tie optional and will be held at Guastavino’s, 409 east 59th Street in New York City.
Patient Update: Mikey Sexton – August 22, 2018
Mikey met with his pediatric CML specialist a few weeks ago and he is doing great! The tyrosine kinase inhibitors (his TKI medication) are working and his chronic myeloid leukemia levels are very low. He starts school next month and his family is very happy.
We are happy also. Way to go Mikey!
Mighty Mikey Sexton – May 16, 2018
Did you know that an orange ribbon promotes leukemia awareness and shows support for leukemia survivors and their family and friends? Orange also happens to be Mikey Sexton’s favorite color. It’s a strange coincidence because seven year old Mikey was just recently diagnosed with CML (chronic myeloid leukemia) and is in need of a bone marrow transplant.
CML is a rare form of blood cancer that typically affects older adults, so it is rarer still to be diagnosed with CML as a young child. It begins in the blood forming cells of the bone marrow, and eventually spreads to the blood. CML is a fairly slow growing leukemia, but it can also change into a fast-growing acute leukemia that is hard to treat.
Mikey’s Mom & Dad
Mikey’s father, Mike Sexton, who is a corrections officer and volunteer fireman says, “he was really tired, kind of pale, and not really acting like himself.” After his diagnosis, and a week at the hospital, Mikey spent 2 weeks at home taking oral chemotherapy drugs.
Mikey and his brother
His doctors believe that a bone marrow transplant will be his only hope for a cure. Mikey’s younger brother was tested, but he is only a 50% match.
This is where the Icla da Silva Foundation steps in. Patients like Mikey, who need a transplant, rely on us to help them find a matching bone marrow donor. We have begun working with Mikey’s family to schedule marrow drives, asking people to join the Be The Match bone marrow registry. You can join the registry by by attending one of our drives, or you can join online, providing basic contact information and some medical history. Be The Match sends out a swab kit, with simple directions to capture your HLA type, and you will be entered in the registry with the hopes of matching a patient in need of a marrow transplant.
There are more than 14,000 patients with various forms of blood cancer who can be saved if they are able to find a matching donor. The online process to join the registry takes 8 minutes. If you match a patient and agree to become a donor, the gratitude and understanding that you saved a life lasts a lifetime.
You can join the registry in honor of Mikey right here, you may be his match.joIN the registry
Another way that you can help is by spreading the word about Mikey’s story. You can share this story by using the links below, and ask your friends to consider joining the registry. If you have access to a larger group of people – through an employer, a club, a school or a church organization, you can host a drive in honor of a patient. We do most of the work, you simply have to fill out the request form here and make the introduction.
You can also help the family directly by making a donation to their personal gofundme page.
Mikey was deemed healthy enough to go back to school, and he couldn’t be happier. This video from his hometown Spectrum News, shows the overwhelming support received at his elementary school.
Warm Welcome to Classmate Battling Leukemia from Spectrum News
Mikey loves hockey
Mikey is a sweet boy who loves being with his friends. Although he was very excited to return to school, his parents have decided it would be best for him to attend ½ days, since Mikey is physically exhausted and can’t make it through a full day.
He likes reading, playing hockey and being a tiger scout…and of course, he also loves the color orange. We have high hopes for a matching donor, and when the time is right, a successful transplant. Keep going Mikey!
In Memory: Vivianna Sophia Lane
With tremendous sadness, we were recently notified of the untimely passing of Vivianna Sophia Lane. She died Tuesday, August 7th at the Lurie Children’s Hospital of Chicago. We extend heartfelt condolences to her family, her friends and anyone who was fortunate to come in contact with her. Sophia was a talented, passionate and hard working young woman who was fighting a battle with Acute Lymphoblastic Leukemia. We were working with Sophia and her family in their search to find a matching bone marrow donor. Sophia was 21 years old.
Her family has notified us that they would like us to keep her hope alive; ” if you haven’t done so, please sign up to be a bone marrow donor. One hundred and forty people signed up to save her life, and others. It made her so happy in her last days.”
Sophia’s Search for a Matching Donor
Vivianna “Sophia” Lane is a 21 year old college student at Lake Forest College, in Lake Forest, IL, a suburb north of Chicago. She is working towards her bachelors degree, a double major in Business and Studio Art.
Sophia is energetic, creative, outgoing and well rounded. She is passionate about art, golf, singing, biking and swimming. She is hard working. Her dedication to golf includes competing on the boys team in high school, caddying, coaching and working at a golf shop. Her devotion to art encompasses volunteering, two internships and her first solo exhibition at the Evanston Art Center.
Sophia also has B cell Acute Lymphoblastic Leukemia. She was diagnosed last year (November 2017), underwent chemotherapy treatments and relapsed just last month (July 2018). Her doctors are working to get her into remission so that she can undergo a stem cell transplant. Sophia does not have a sibling match and will rely on the Be the Match registry to find a lifesaving donor.
We need to find a matching stem cell donor for Sophia. The only way to do this is to ask more people to join the registry.
Joining is easy. Click the link, setup an account with an 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 in the registry and included in patient searches.
More than 14,000 patients are searching every year. Their cure is inside you. You may save a life.
Please join the registry for Sophia: join the registry
To find more information about the donation process, please click here.
If you have already joined, please help us share Sophia’s story so that we may get others to consider becoming a potential life-saver.
Have you ever considering volunteering your time. Some people have a skill, or an experience that they wish to share. Others are looking to gain an experience or learn about something new. And many just want to give back, to feel that they contributed, assisted another person, or supported a particular mission or purpose.
At Icla da Silva, our mission is to save lives by recruiting bone marrow donors and provide support services to children and adults with leukemia and other diseases treatable by marrow transplants.
We could not continue this mission without the support of our many volunteers. We celebrate those who have the desire to give, learn, share and the dedication to contribute their time to our foundation. We are grateful to the many students, survivors, patients, family members, and friends who put forth great effort to continue our mission.
Volunteers help us organize and activate more than 2500 bone marrow drives across the country every year. They assist us in the development and activation of fundraising events, they act as committee members and they serve on our board.
We are thankful to every last one of them.
We recently asked some of our volunteers about why they work with us. Below you will find some of their stories.
If you wish to become a volunteer with us, please visit here to enter your information and we will contact you.
Peggy Rios – Miami, FL
I volunteer because I am amazed that I can be a small part of an effort that literally saves lives. It is especially important to inform Hispanics about the importance of joining the registry so more of our Latino friends and loved ones who are struggling with bone marrow diseases can be saved.
I want people to know the realities of joining – how easy it is and how safe it is and most importantly how magnificent it is to be able to save someone’s life.
Many people don’t join because they are afraid. They know very little about the process and usually most of what they think is false. They are unaware of how easy to can be to save a life and how worth it is. I hope that as more donors and recipients share their stories more people will join the registry.
Georgina Tiniakos – Chicago, IL
I volunteer with Icla da Silva because I want to spread more information about the benefits of donating bone marrow. It can save lives.
Sisters from Lambda Theta Alpha, Gamma Epsilon Chapter – Florida State University
We chose to volunteer for the Icla da Silva Foundation because we want to spread awareness to as many people as possible, in the hopes of one day saving someones life!
Lonnie Fowler – Orlando, FL
I first learned about the Icla da Silva Foundation from my wife who is a professor at Florida Technical College. They were doing a donor drive on campus. The moment I found out what they do for people; I knew I had to help. I spoke at the school when they came to visit and that’s how I met Mauricio Murillo. I wanted to do my part and tell my story to help other people save lives.
By joining the registry you can help save a life. If it weren’t for organizations like the Icla da Silva Foundation, I wouldn’t be alive today to tell my story. I am an AML leukemia survivor for over 20 years. You just fill out application, do the swabs and if you’re a match, you get a call to donate.
I believe the biggest challenge for people is knowing the procedure and seeing value on why they should make a donation. There are also many myths out there regarding bone marrow donation. It’s a simple process, easy to register and also donate when a match is found.
More stories of survivors need to be told. It will inspire and motivate people to help save someone who is really in need. Statistics are also important on how a bone marrow transplant increases the odds of survival for those battling cancer. My odds were a 5-10% chance to survive the transplant; imagine what my chances of surviving were without it. I wrote a book about my cancer survivor story and about my transplant. I’m in the process of doing a revamped version including more details of my story. (You can visit here to find out more about Lonnie’s book.)
Marta Mendez – Chicago, IL
Volunteering has always been a rewarding experience especially with the very kind hearted and hard working people I have met at Icla da Silva. I hope that our efforts in raising awareness of the donation registry has made a significant impact on people’s lives.
Natalia Mejia – Weston, FL
I volunteer because I like to help people regardless of their nationality, age, gender or condition. There is much need in everything related to cancer including education. Community unity is important.
There is a lack of information about how easy it can be to save a life through donation. We must start by making people aware of what it means to register as a possible donor. Let each person understand that it can be the only opportunity save a patient with a blood disease.
Because people do not know the information, they have the wrong perception of what it means to be a bone marrow donor. They don’t even understand that the chances of being a donor are really low.
In December of 2017 my father was diagnosed with multiple myeloma. I am now fully aware that one of the treatments is a bone marrow transplant, I am convinced of the need to educate people, especially those who do not register due to ignorance or lack of reliable information.
Love Your Melon – University of Central Florida
We work with the Love Your Melon Campus Crews at many different universities. You can read more about our relationship here.
The girls at the University of Central Florida insist that the bone marrow registry is so important, whether they sign up 5 people or 50 to the registry, it’s all making a difference, because it only takes one match to help save a life.
Dr. Nalliene Chavez Rivera – Roanoke, VA
I started volunteering for the foundation when I was in college. I was looking for a way to make a difference, develop my leadership skills and learn about topics that were related to medicine. When I joined the Icla team with Mauricio, and we began talking to others about bone marrow donation and blood cell donation; I realized the huge need there was for more information and understanding in regards to this topic. This motivated me even more to educate others and dispel myths around this issue. I also learned a lot about myself and what motivated me to pursue my medical career, seeing the profound effect that diseases can have in the human day to day life and condition.
As I was volunteering, I also realized the need to recruit as many people as possible, especially minorities. When I thought about it, minorities encompass such a small percentage of the registry that if anyone in my family ever got sick we would have a much lower chance of finding a life saving bone marrow match. Registering also does not mean you will get called to donate the next day but it does mean that you have the option of doing so, knowing that you will play a crucial part in a potential life saving intervention.
Sometimes the process is scary so I encourage everyone to get educated on the need and the process of bone marrow and blood cell donation and give someone else the gift of living a healthy life. I think media and movies have helped spread the idea that this process is painful and dangerous to those donating and getting the right information and garnish interest from others has been a challenge.
Being in the medical field I have met many children and adults with bone cancer. I have seen first hand how devastating this diagnosis can be to the patient, and their families and close friends. I have seen the frustration from families and their pain as they try to do everything possible to save their loved ones life. This makes it very hard for me to understand why most people won’t sign up. Seeing these cases every day makes me want to teach others and encourage them to sign up to the registry and really give others the chance to live a full healthy life.
Thank you to our many volunteers. Without you, we could not save as many lives or support as many patients in need! If you wish to join us as a volunteer, please visit this link and enter your information so we can contact you.
Celebrating 25 Years Saving Lives
“How wonderful it is that nobody need wait a single moment before starting to improve the world.” – Anne Frank
Dear Friends,
This year marks the 25th Anniversary of The Icla da Silva Foundation. For 25 years we have worked tirelessly to save the lives of patients with leukemia and other diseases treatable with bone marrow transplant.
The Icla da Silva Foundation was founded in memory of my younger sister Icla. Our family moved to New York from Brazil after Icla’s diagnosis with leukemia because the doctors told us it would be impossible to find a life-saving bone marrow match in Brazil due to a lack of a registry in the country. There is only a 25% chance a sibling will be a match, however neither myself nor my brother were. Our family began to enlist our new community in New York in an effort to add more bone marrow donors to the National Marrow Donor Program’s registry (now the Be the Match registry). We went to churches, community centers, and schools, all hoping that one special person might be my sister’s cure. Sadly, Icla passed away in New York City, never having found a matching donor.
In a note found after her passing, Icla wrote: “Dear Mom, I’m fine. Don’t worry about me. I want you to help all of my friends.” Icla’s last brave wishes were to help people in need of bone marrow transplants, and thus the Icla da Silva Foundation was established.
When my sister passed away on June 21, 1991, she was only 13 years old. This year, as we celebrate 25 years in service to patients in need of a bone marrow transplant, it is hard to wrap my head around the reality that this organization, her namesake, has existed almost twice as long as she did on this Earth. It is a testament to her heart and her vision that we stand here today.
The Icla da Silva Foundation exists to support patients by recruiting bone marrow donors, raising funds and assisting with financial and emotional support. We also help patients navigate the medical system and make referrals to various treatment centers depending on the specific needs of each patient.
I am very proud that the Icla da Silva Foundation is the largest recruitment partner for the Be the Match registry, recruiting over 38,000 potential bone marrow donors every year. Recognizing the importance of genetics and ancestry in finding a compatible donor match, we organize drives with a specific mission of adding donors from diverse ethnic backgrounds.
Despite our successes, our mission isn’t done. There are 13,000 people who need a bone marrow transplant in the US every year, 75% of whom won’t find a match in their family, and the sad reality is that many thousands will pass without ever finding their match.
I wanted to take this opportunity to thank our friends, our supporters and the many volunteers who dedicate an average of 3,000 hours every year to saving lives. This year, we celebrate you for your support in ensuring that we raise the critical funds necessary for advancing our mission, allowing us to continue in our fight against blood cancers and other diseases that can only be cured by a bone marrow transplant. Without you, our life-saving work would not be possible. We are happy to commemorate Icla and remember her positive spirit that continues to inspire us to make a difference in other people’s lives.
Your friend,
Airam da Silva
President
The Icla da Silva Foundation
PS: To learn more about how you can become involved with The Icla da Silva Foundation, please visit our Get Involved page and add us on Facebook, Twitter, and Instagram.