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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.

HELP US SUPPORT MORE PATIENTS

 

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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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The Reason We Do What We Do

Two Cancer Patients Meet Their Life-Saving Bone Marrow Donors


The Icla da Silva 27th Hope Gala occurred recently in NYC. It was a wonderful evening spent reconnecting with old friends and making new ones. The cocktail hour was a buzz with beautiful smiles and interesting conversations. While the cameras were flashing, cocktails were poured, the band played lite jazz and delicious hors d’oeuvres hit just the right spot.

A silent auction was held during the cocktail reception in order to raise funds for the Foundation. Items were donated from near and far, including world-class dining from Per Se and restaurant Daniel, roundtrip airfare from JetBlue, select wines, designer jewelry, and a host of experiences from various spas, sports venues, and salons.

There are still a few items available. You can make a bid to win one of these items via this link.


The Main Event

Similar to years passed, the highlight of the evening was the first time meeting between a patient and their life-saving bone marrow donor.

U.S. Law maintains strict rules regarding the confidentiality of bone marrow patients and their donors. Both patient and donor must wait at least one year before they are asked if they consent to share their information. Hopefully, if they each say “yes”, they get the opportunity to meet face-to-face.

The Icla da Silva Foundation is fortunate to make these meetings happen every year.

But this year was different, this year we were able to showcase two patient/donor meetings.


Meeting #1: Giliani and Marta

We arranged a meeting between 8-year-old Giliani from Miami, who was diagnosed with Kostman’s disease, and her bone marrow donor, Marta Sanchez, from New York.

Marta had signed up to become a donor at a drive organized by the Icla da Silva Foundation many years ago. When she finally received a call that she matched a patient in need, she immediately said yes to the transplant.

Their first meeting was a heart-warming experience for everyone in the room. In the presence of nearly 300 people, among the glaring lights and flashing cameras, adorable Giliani came up to the stage with her mom…and met Marta, the complete stranger who saved her life.

You can read their story and watch a video of their emotional first-time meeting here.

As more people are added to the registry, the chances for a life-saving transplant increase. This year the Icla da Silva Foundation was able to share a second patient/donor meeting at our Hope Gala.


Meeting #2: Stephanie and Crystal

We also had the great fortune to present the first time meeting between Stephanie, a young woman from New Jersey who was diagnosed with AML (acute myeloid leukemia) and her life-saving donor Crystal Dozier from Arizona.

As a leukemia patient, Stephanie and her family had been working with the Icla da Silva Foundation during their search for a match. Stephanie had been to some of our events, and she came prepared with a speech…but she wasn’t prepared to hold back the tears…and neither could anyone else in the room.

Everyone watched as Stephanie and her donor Crystal hugged for the first time on stage. You could feel the intensity of that hug, and tears of joy were flowing at every table in the ballroom.

Read more about Stephanie’s battle for survival and watch the video of their first-time meeting via this link.


You Can Help Us Save More Lives

The Hope Gala was a heartwarming and unforgettable evening. But our Gala was more than just two first-time meetings between a patient and their donor, it was a celebration of 27 years of service, with more than half a million potential donors added to the registry.

The Gala was also in honor of the nearly 800 people who registered through Icla da Silva and saved lives by donating their bone marrow to matching patients.

We are grateful for those lifesavers. We also appreciate the many people who support our mission.

There are several ways that you can help us continue our mission of saving lives. The top 3 are as follows:

  1. Speak with us about hosting a drive through your connections with a university or employer. We are always looking for opportunities to reach people between the ages of 18-40 who may be interested in saving a life.
  2. You can volunteer at one of our events, or at some of our larger recruitment drives. We can always use a helping hand.
  3. Of course, you can also make a financial donation of any size. All donations are tax-deductible and are eligible to receive corporate matching from their employers. Ask your company if they match charitable contributions made by employees. Obviously, larger donations help us make strategic investments that further our vision.

Our vision is to ensure that every patient, regardless of ethnicity, has equal access to a matching stem cell donor. We also strive to give patients the support they need in order to receive their treatment.

You can also help by joining the registry. Click one of the links below. A swab kit will be mailed to your home. Once you return that kit, your name will be included in searches for life-saving donors.

Join the registry in honor of Giliani:

join the registry

Join the registry in honor of Stephanie:

join the registry

Thanks for reading. We hope to see you at future celebrations.

Written by Bret Itskowitch

 

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Icla da Silva MatchMaker 5K in NYC – Join Us on May 18th

Registration is open for the Icla da Silva MatchMaker 5K in NYC.

This is our 9th annual 5K Run/Walk in NYC. It will take place on Saturday, May 18, 2019.

All proceeds help us add more potential life-savers to the #BeTheMatch bone marrow registry. Donations also enable us to assist more patients in their battle against life-threatening diseases like leukemia, lymphoma and sickle cell.


This year, the run will take place in the beautiful 
Flushing Meadows Corona Park in the Northern part of Queens. The park has been home to two World’s Fairs and now the Icla da Silva MatchMaker 5k.

In the spirit of helping diverse communities in their fight with various blood cancers, register today and run or walk “around the globe” with us.

You can run by yourself, but you will never be alone.

The Icla da Silva Foundation has been recruiting bone marrow donors and supporting patients in need for 27 years.

Join a team, or start your own. Help us raise funds and have fun doing it.

register to walk/run

Early Bird registration is only $25, but it ends on March 18, so register today!

make a donation

See you on May 18th.

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A Season For Giving – Part 4 – A 2nd Chance At Life

HAPPY NEW YEAR!

Help us greet the new year with a 2nd chance at life!

With your financial contribution, you are supporting us in fulfilling our mission to save more lives…to give more patients that 2nd chance at life. Funds that we raise help us recruit potential bone marrow donors and add them to the Be The Match donor registry.

donate and make a difference

Please consider making a tax deductible donation to the Icla da Silva Foundation and help us host more drives, recruit more donors, and aid more families in need.

 

Specifically, we need to add more potential life savers who are ethnically diverse. All minority segments are under represented and those patients are much less likely to find a matching donor.

With your help we can change this unfortunate fact.

 

 

We need to recruit more people like Michael Powell, who registered through Icla da Silva in 2007. He received the call that he was a match, not once, but twice. He generously donated his stem cells in 2013, and then he gave his life saving bone marrow in 2017.

His bone marrow was successfully transplanted into Aunesti Sullivan, and she began her 2nd chance at life on June 2, 2017 at the age of 12. She is doing great and living the active life of a young teenager – thanks to Michael.

Please help us recruit more people like Michael and add more hope for the 14,000 patients who are in need each year. Even a small financial donation will help us give more patients like Aunesti a 2nd chance at life.

make a financial donation

If you missed part 1part 2, or part 3 of this 4 part series, you can read them by clicking the links.

Icla da Silva is a 501(c)3 organization and your donation is tax deductible.

Thank you for your support!

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A Season For Giving – Part 3 – Keeping Hope Alive

KEEPING HOPE ALIVE!

This Holiday season we are sharing four inspiring stories from our patients and friends. We hope that these stories move you and incite you to make a donation.

With donations from people like you, Icla da Silva is able to manage a small patient support program. The program provides aid to patients in need.

Our goal is to Keep the Hope Alive for as many patients as possible. Whether they are searching for a match, or working through treatment, we do our best to provide emotional, logistical, and as often as we can, financial support.

Our budget is small, but we are always available with a supportive ear and a kind word.  We help with logistics by making referrals regarding transplant centers, and recommendations for second opinions and clinical trials.  When we can afford it, we try to assist financially with HLA typing and sometimes, transportation, lodging or meals. This year, we were able to help more than 200 families.  Whether that was 2 nights at a Holiday Inn, or a gas card to get to a treatment center, we support the patients we work with as best we can.

We would love to be able to help more patients, but we can’t do it without you.  Please consider a donation and help us Keep Hope Alive.

make A donation

You may remember Ne’Mya Sullivan from last year.

Mya was blessed to receive a life-saving stem cell transplant from her brother. With so many weeks in the hospital, both before and after her transplant, Mya’s mom was forced to quit work; despite their growing list of bills and expenses. Thanks to people like you, we were fortunate enough to be able to assist the family with a small grant. We are grateful that we were able to Keep the Hope Alive because of donations from our supporters.

Thank you to amazing people who supported us through our journey and continue to check in. We love you all…thank you most to the Icla da Silva Foundation. You are all so amazing; more than supporters, more like family. Thank you for everything.” -Nekisha Banks Sullivan

One year post transplant and Ne’Mya is doing great. She is in the 5th grade and has joined the cheerleading team. She is grateful for a daily routine without meds, and the opportunity to enjoy her family without restriction. Go Mya!

A single donation can make such a profound impact on a patient’s family. Will you help us continue to Keep Hope Alive? We want every family to get the support that they need in the New Year.

Help us help them.

KEEP THE HOPE ALIVE

If you missed part 1, or part 2 of our 4 part series, you can read them by clicking the links.

Icla da Silva is a 501(c)3 organization and your donation is tax deductible.

Thank you.

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A Season For Giving – Part 2 – The Gift of Hope

SEASONS GREETINGS!

This Holiday season we are sharing four inspiring stories from our patients and friends. We hope that these stories move you and incite you to make a donation.

All throughout the year, the Icla da Silva Foundation strives to give more patients and their families the Gift of Hope.

During the Holiday Season, the Season for Giving, we ask for your help. The funds that are donated go towards adding more potential life savers to the Be The Match bone marrow registry.

make your donation

Too many patients are searching for a matching stem cell or bone marrow donor without success.

Veronica Depauli is one of those patients. Veronica is searching for her match.

She has a very rare disease called ADO II. It is a genetic disorder which causes increased bone density and abnormal bone growth. Without a matching donor, her condition can lead to facial paralysis, blindness and death. Veronica’s family has been searching for a bone marrow match for over two years, and we have been supporting them in their search.

Although her condition gets more complex with each day, Veronica continues to smile. Despite the many doctor visits, the tests, the pain…she smiles.

We are asking for your help. There is currently no match for Veronica on the registry.

Through financial support from people like you, we are able to host more drives and give more HOPE to the many patients in need of a match.

We want to save more lives. Over the past 7 years, we have helped more than 500 patients find their match. Your donation will help us add more potential life-savers to the registry. We are hopeful that one of them will be a match for Veronica.

give the gift of hope

Please consider a donation and help us continue to give the Gift of Hope.

If you missed part 1 of our 4 part series, you can read it here.

Icla da Silva is a 501(c)3 organization and your donation is tax deductible.

Thank you.

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A Season For Giving – Part 1 – The Gift of Life

SEASONS GREETINGS!

This Holiday season we are sharing four inspiring stories from our patients and friends. We hope that these stories move you and incite you to make a donation.

The Season represents a time for giving. For us, it’s about Giving the Gift of Life. We use the funds that we receive to add more potential donors to the Be the Match registry. We are hoping to find that perfect match, a Gift of Life for one of the many patients that we work with.

One of those patients is Asaya Bullock.

When Asaya was just 8 months old, he was diagnosed with a rare autoimmune disease called IPEX syndrome. A person with IPEX lacks the ability to regulate their immune system, they loose the capability to defend against disease. It can also cause the immune system to attack the body’s own tissues and organs.

Asaya often feels pain throughout his entire body. Although he is allowed to attend school, he misses many days due to treatments, or simply because he doesn’t feel up to it. Asaya and his family have been searching for a bone marrow donor for most of his life.

Asaya is African American and West Indian Caribbean. Unfortunately, his ethnicity is not well represented on the bone marrow registry. Only 23% of African American patients with a blood cancer are successful in finding a matching stem cell or bone marrow donor. By comparison, Caucasian patients with the same diagnoses, have a 77% chance of finding a matching donor.

There simply aren’t enough potential donors who have joined the registry. The Icla da Silva Foundation is trying to change this by adding more people to the registry who are ethnically diverse.

In the last 7 years, the time Asaya has been fighting his disease, we have added more than 200,000 potential donors to the registry. Unfortunately, there is still no match for Asaya.

We will continue until we find one.

By donating just $100 you can help defer the cost of adding one person to the bone marrow registry. With your help, we will find a life-saving donor for Asaya and many other patients like him Please donate and help us Give the Gift of Life to children like Asaya.

please donate today

You can read part 2 of our 4 part series here.

Icla da Silva is a 501(c)3 organization and your donation is tax deductible.

Thank you.

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A Night to Remember with Jennifer Jones Austin: Together We Can Save More Lives

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.  

rsvp for a night to remember

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Join Us on October 17th and Help Save More Lives

 

The 2018 Hope Gala takes place on Wednesday, 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.  The Hope Gala is the largest fundraising event for the Icla da Silva Foundation.

 

Why Are We Celebrating?

The Hope Gala celebrates our achievements and raises funds to continue our fight against leukemia and other diseases treatable by bone marrow transplants.

Thanks to your support, so far this year, the Icla da Silva Foundation has held 1374 donor recruitment drives across the country.  At those drives, we have added 20,246 potentially life-saving donors to the Be the Match bone marrow registry.  We aren’t finished yet.

Our focus is to increase awareness, and register more donors who are ethnically diverse.  Unfortunately, blood cancer patients who are ethnically diverse, have less than a 50% chance of finding a potential match.  We want to change that.

Why Should You Attend?

Your attendance and the resulting donations this year, will help us add greater diversity to the bone marrow registry. A portion of the funds raised, also go towards our Patient Support Services program.  The program helps patients and their families deal with some of the financial difficulties when presented with a life threatening blood cancer.

Icla da Silva uses it’s knowledge and experience to guide patient families with information, logistics, and emotional support.  With the funds raised last year, we have been able to help patients with transportation, lodging and meals related to their bone marrow transplant and treatment.  We have also assisted with HLA typing and medical expenses.

Will We See You This Year?

This years Hope Gala will include more than 300 influential guests from the worlds of business, healthcare, the arts, philanthropy, and academia. The evening promises to be an affair to remember. Please extend an invitation to your friends and associates.  Cocktails and a silent auction begin at 6:30PM.  Dinner and dancing start at 7:30 PM.

JOIN US IN OUR FIGHT TO HELP MORE PATIENTS 

please RSVP today

 

 

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