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Veronica’s Story – Searching for a Matching Donor

It was winter and she had a bad cold.  The cold had triggered an asthma attack and her parents were worried.  They took her to the emergency room.  The attending doctor ordered a chest x-ray to rule out pneumonia. Veronica did not have pneumonia…but the radiologist was concerned.  Her bones appeared larger than normal for a girl of her age.

After a year of referrals to various doctors – endocrinologists, metabolic specialists, radiologists, and hematologists, after multiple rounds of bloodwork, genetic testing and numerous x-rays, it was determined that Veronica Depauli had hardened bones throughout her body. In March 2016, Veronica was diagnosed with a form of osteopetrosis (autosomal dominant osteopetrosis type 2, or ADO2).  ADO2 is a rare disorder characterized by increased bone density and abnormal bone growth, which can lead to recurring fractures, vision loss, hearing loss and facial paralysis. It can also impair the function of bone marrow, because the bones are growing at a disproportionate rate, which will prevent the body from producing new blood cells and immune system cells.

Veronica Depauli is a beautiful, intelligent 7 year old girl.  She likes singing and art. You wouldn’t know it by watching her draw, or play with her younger sister Annabelle, that she has a rare disease.  You wouldn’t know that her optic canals continue to narrow, which may result in vision loss, or that her bone marrow space has diminished, although it still continues to function.  With each passing day, the severity of her symptoms continue to increase. Her little sister helps distract Veronica whenever she is in pain. She brings her ice packs and coloring books and tries to get her to smile by singing.  She does the best she can to help her big sister.

Veronica Needs Our Help

Veronica Depauli needs a bone marrow transplant.  Her doctors believe it can markedly improve her osteopetrosis and offers the best chance for longer-term survival.  

The challenge with every bone marrow transplant is finding a matching donor.  The difficulty is finding someone who has a similar HLA type to yours. HLA is a protein, or a marker, found in most cells in your body.  Your immune system uses these markers to recognize which cells belong in your body, and which do not. When two people share an ethnic background, there is a better chance that their HLAs will match up and a transplant can take place.

Unfortunately, there are currently no matches in the national database for Veronica.  Currently, Hispanic and Latino patients only have a 46% chance of finding a matching donor.  This is because only 11% of the current donor pool are Latino. Veronica’s mother, Elise, is of Peruvian/Ecuadorian descent.  Her father, Federico, is Uruguayan.  We need more people of Hispanic and Latino heritage to join the registry.

Finding a Bone Marrow Donor

The Icla da Silva Foundation is working with the Depauli family to help find a matching donor.  We are the largest recruitment center for the Be The Match registry and we focus on adding ethnic diversity to the bone marrow registry.  As more people of Latino descent are added to the registry, hope is increased for each of the 16,000 patients who are in need of a bone marrow transplant every year.

You can join the registry, and add hope for Veronica, right here:

 join the registry

Veronica’s parents have been very active in spreading the word and trying to get more people to join the registry.  Not just for their daughter, but for all of the patients who are in need of a life saving transplant.

“It’s been very discouraging and I am desperate because God forbid my daughter does not get a match” – Elise Luciano, Veronica’s Mom

“Please help us, what would you do if it were your child, your family…please join the registry, you could save somebody’s life” – Federico Depauli, Veronica’s Dad

Joining the Registry

The steps to join the registry are simple:

  1. Register online by clicking the link.
  2. Set-up an account with a password, and answer some basic background and eligibility questions.
  3. Receive a swab kit in the mail so they can get a copy of your HLA marker by swabbing the inside of your cheek with a q-tip.
  4. Return the swab kit so you can be added to the registry.

If you match a patient in need of a life saving transplant, the vast majority of bone marrow donations occur through a process called PBSC, which is a non surgical procedure that is very similar to giving plasma. If you would like more information on the typical donation process, please click here.

Despite thier continued challenges, Veronica’s parents hold onto the hope that a matching donor will be found.  

“One day my daughter will be pain free, one day my daughter will be able to live just like any other child” -Elise Luciano, Veronica’s Mom

We hope so too Elise.

Please join the registry for Veronica Join the registry

 

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The Fighter

Little Ricky Roman“Little” Ricky Roman isn’t so little anymore, he is now almost as tall as his dad, “Big” Ricky.  In February, Little Ricky turned 16, but the blood pulsing through his body is technically only seven years old.  In May, he celebrated his 7th transplant birthday, 7 years after receiving a stem cell transplant from an unknown donor.

In September 2010, Little Ricky wasn’t feeling well.  He was bruising easily and his eyes were a pale yellow.  His parents rushed him to the doctor. One month later, he was diagnosed with severe aplastic anemia, a rare and serious condition in which the bone marrow stops producing enough new blood cells.  It leaves you feeling weak and fatigued, with a higher risk of infections and potential heart complications.

Little Ricky was an active child, so his fatigue was an obvious sign that something was wrong.  He liked biking, baseball and boxing. After diagnosis, his obsession with boxing took on a new meaning.  While no one is prepared for a battle with cancer, Little Ricky became a true fighter.

The Search for a Match

It was determined by his doctors that a stem cell transplant was his only cure. At the time, there was no match on the Be The Match bone marrow registry.  Aunts, uncles and cousins were tested.  Unfortunately, no one was a match for Little Ricky.  With the support of his family, friends and the Icla da Silva Foundation, everyone was determined to find a match. We held bone marrow drives, getting as many people as possible to join the registry, and we all hoped that a life saving match would turn up.

Ricky spent a year going back and forth to the hospital, for treatments, tests and observation.  His mom had to quit her job so that she was always available for a quick trip to the hospital, an overnight stay, or weeks of treatments.

Finally, A Match Was Found

Little Ricky Roman, the fighter, received a successful transplant in May of 2011 at NY Presbyterian Hospital.  

Someone who had joined the Be The Match registry was a match for Ricky.  Fortunately, they said yes to a stem cell donation. Ricky has yet to meet the donor who joined the registry.  He knows that it is a woman, and he is grateful that she said yes when she received the call asking her to donate.  We hope to be able to arrange a meeting between Little Ricky and his donor.

Annual Ricky Roman Fundraiser

Since the time of his diagnosis, the Roman family has been very supportive of the Icla da Silva Foundation.  They are avid sports fans; they ran together in our annual 5K, and for the past 8 years, the Roman’s have been hosting a Softball Fundraiser to support the Icla da Silva Foundation.  We are extremely grateful for their efforts. The money they raise helps us continue fighting for patients who need a bone marrow transplant. You can click this link to find out more information about the Ricky Roman Softball Fundraiser and register a team. 

Lil Ricky Roman Softball Fundraiser

 

If you are in or near Jersey City, join them on the field:

Saturday August 4

9:00 AM

Caven Point Softball Fields, Jersey City, NJ

 

It’s easy to enter a team, or simply support their efforts through a donation.

We are very grateful and we appreciate their continued support of our efforts.  We know many patients are thankful as well (click below to support the fundraiser).Ricky Roman Softball Fundraiser

Keep Fighting Ricky

According to his Aunt Maria, Ricky is doing well.  He starts High School in the fall. He loves baseball, bikes, and playing video games.  Of course all children love playing video games, often to the exasperation of many adults, but this is a special circumstance.  Spending a year in and out of the hospital for treatments gives ‘playing video games’ a new understanding.

Keep fighting Ricky, keep playing, keep growing, and thank you to you and your family for continuing to raise funds for us.

 

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PATIENT UPDATE: Mission of Joy – Creating Superheroes

In early July of 2017, Aashim Joy was diagnosed with ALL (B-Cell Type Acute Lymphoblastic Leukemia). His only hope for a cure is a matching bone marrow transplant, and we first reported his story here.

Aashim is currently in remission, which is good news, at least temporarily.  For leukemia patients undergoing chemotherapy, remission means that there is ‘less’ cancer in the body.  Unfortunately, the chance of a relapse, or a recurrence of cancer, remains high and it is important that they maintain their treatments, and continue their search for a matching bone marrow donor.

Aashim Joy lives up to his name, literally.  He is in good spirits, always positive and usually ‘joyful’.  He is very focused on spreading the word about joining the registry and supporting patient services.

Spreading Awareness / Creating Superheroes

Recently, he attended and spoke at our 5K in NYC, he also talked about his journey at our Mix & Match event last month.  If you attended either event, you heard Aashim speak about becoming a superhero. He is on a mission, he wants to create superheroes.  He is devoted to educating as many people as possible about the importance of registering to become a bone marrow donor, and staying committed if you are identified as a match for someone.  He wants everyone to understand how meaningful it is to save a life and thus, how easy it is to become a superhero. 

Working with bone marrow patients for the last 25 years, we know he is right.  We understand that reaching out to friends and posting on social media does not generate the numbers necessary to save the many lives who are in need of a matching donor.  Try as we may, enough people don’t understand how simple the process of registering is. They fail to recognize that the vast majority of bone marrow donations are neither painful, nor invasive. As Aashim says – “There are a lot of misconceptions associated with bone marrow transplant, and most folks don’t really feel it’s worth the effort to wake up on a Sunday morning and register as a donor.”

Aashim, along with his beautiful and intelligent wife Reema, stand behind this mission, to raise awareness and increase support.  From their apartment in NYC, Aashim and his wife have spearheaded many bone marrow drives throughout India.  His friends at Deloitte put together a fundraising team and participated as ‘Run For Joy’ in the MatchMaker 5K.  Aashim even donated his birthday to the Icla da Silva Foundation, helping our efforts to provide more patient support services to those in need.

Supporting and Fundraising

Aashim donated his birthday by setting up a simple donation page. He went to www.icla.org/get-involved and clicked on “Fundraise with Us.” From this link, he easily developed an online fundraising page.  Aashim wrote a short paragraph about his experience, and then posted the link to his Facebook page, inviting his friends and followers to get involved. The fundraiser lasted until his birthday, and raised 120% of the goal! Thank you to Aashim and all his friends and family for taking this extra step to ensure that more patients who need a bone marrow transplant can find a match. You are all superheroes and you are all saving lives!

It’s so easy to start a fundraiser for the Icla da Silva Foundation.  Follow the same steps as Aashim, customize your fundraising page, and share with your friends and family. It doesn’t have to be your birthday to get involved.  Whether you’re running a marathon, remembering a loved one, or celebrating an anniversary, any time is a good time to be a superhero and help save lives.

You can be a Superhero!

Everyone between the ages of 18-44 can be a superhero.  Start by joining the registry in honor of Aashim https://join.bethematch.org/gettestedforjoy. If you want to make a donation to Aashim’s birthday fundraiser, you can still do so here.

Thank you to Aashim, and his wife Reema, for your continued efforts to spread awareness about blood cancers and the power of joining the Be The Match registry; saving a life can make anyone a superhero.

 

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Hope Was Everywhere

The human spirit is alive. People are surprisingly positive and giving, kind and generous…I witnessed it first hand last weekend. Hope was everywhere.

Saturday, April 14th was the 2nd annual Mix and Match luncheon sponsored by the Icla da Silva Foundation. Despite the inherent challenges and dire consequences of people dealing with various forms of blood cancers, the room was filled with smiles and hope.

Family members stood and talked about their involvement with Icla da Silva. They shared stories about the loss of loved ones due to leukemia and MDS, but they still maintained focus on the importance of spreading the word about bone marrow donation and doing everything they could to help others, in the name of their father, son, daughter, husband, sister, wife, cousin and friend.

 

Donors talked about receiving the call that they were a match and feeling blessed by the opportunity to give life to someone through a bone marrow donation. Often, the process is not much more cumbersome than giving plasma, and they described the chance to donate their bone marrow as a privilege, as something they did not think twice about, as a way to save a person’s life.

 

 

Survivors shared information about their journeys, the diagnosis, the chemotherapy, the loving support from friends and family. They talked about working with Icla da Silva and Be the Match on the search for a matching donor, and they smiled about the outcome of a successful transplant.

And then there were the patients, some just beginning their journey, others surviving for longer than expected…all hoping that a matching donor could be found.

Icla da Silva Mix & Match luncheon, April 14, 2018

Some matches are harder to find. Be the Match has is the largest and most diverse bone marrow registry in the world, but it is still not big enough, or diverse enough. The Icla da Silva Foundation focuses on increasing both the size and diversity of the registry. We work to recruit potential donors from all ethnic segments in the hope that more patients will be able to find the match that they need.

You can help us save more lives by completing any combination of the following three actions:

  1. Join the registry and add hope to the many patients looking for a matching donor. Please click the link  Join the Registry.
  2. If you have the ability to connect and communicate with a group or community organization, we can work with you to schedule a Bone Marrow Drive hosted by you or your group; please enter your information using this link Host a Drive, and someone from the Icla da Silva Foundation will contact you. It only requires a small investment of time, and the promise to gather an interested crowd.
  3. The other way to provide support is financially. Even small donations help us to recruit more donors and provide support services to patients in need. We are a 501 (c)(3) and all donations are tax deductible. You can donate using this link Donate Funds.

Please help us continue to keep hope alive.

Thanks!

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Celebrating 25 Years Saving Lives

icla da silva hope gala

Hope is everything. It is the light in the eyes of those treading dark places, as they embrace the unknown with peace and fierce determination. It is the fire in the hearts of those who are suffering, a burning zest for life propelling them on through the valleys.

For twenty five wonderful years, the Icla da Silva Foundation has found hope and love holding it together. A non-profit organization with a special passion for bone marrow donor recruitment, every day brings a new sense of urgency towards the patients and their families relying on the foundation’s patient support services. The ups and downs of this kind of work may feel overwhelming at times, but where there is hope there is usually inexplicable endurance and unimaginable reward.

Show Up To A Magical Place

On October 18th, 2017 the Icla da Silva Foundation will host its annual Hope Gala. A fundraising benefit, it supports patients in need of bone marrow transplants, together with their support teams. It is also instrumental in continuing to effectively drive bone marrow donor recruitment in partnership with the Be The Match Registry.

An annual highlight of the New York event calendar, this festive celebration promises to be a fantastic experience as always. As people gather from all walks of life at Guastavino’s in New York City, it is time once again to tip our hats to the brilliant contributions of people who care. This year’s Hope Gala will be co-chaired by Claudio and Tânae Ferro and Claudio and Renata Garcia. Both Mr. Ferro and Mr. Garcia are executive leaders from AB Inbev.

Since the 2017 Hope Gala commemorates 25 years of firm foundational support provided by the Icla da Silva Foundation to a host of communities from around the world, it seemed wholly appropriate to be holding the event at Guastavino’s, New York. Nestled at the foundation of the 59th street bridge, the classic lines lead down pathways of fantasy and magical memories. Patrons and heroes gather for a glorious celebration of life, in preparation for another year providing hope to those who need it most.

Silent Musings

There is a unique opportunity to participate in the foundation’s silent auction – an interesting collection of items to pique the dullest imagination. All proceeds go towards funding the foundation’s valuable work in bone marrow donor recruitment and patient services. Exciting items on auction include something for everyone, from an original painting by Concalo Ivo to (2) round trip tickets to Rio de Janeiro via Cope Airlines to tickets and backstage tour to Dear Evan Hansen.

Why not make a little extra donation on the side, too? Each and every dollar adds a new spark of hope for those suffering and searching for a bone marrow transplant match. The gala promises to be the largest fundraising event for the Icla da Silva Foundation to date. Saving lives is no small matter.

“We have an aggressive goal to increase funds, especially to aid families who have been faced with mounting medical bills in a tough economy,” said Airam da Silva, President of the Foundation. “The Foundation will utilize every possible resource to help save as many lives as possible”

A Matter Of The Heart

This year the foundation will honor two key players in the world of bone marrow donation. The first, Dr. Jeffrey Chell, is the Chief Executive Officer of Be The Match Registry. Be The Match is currently the largest, most diverse bone marrow registry in the world. It provides hope to brave souls suffering from leukemia and other diseases requiring bone marrow transplantation. He will be receiving the Legacy of Hope Award for his superb contribution to saving lives.

The Icla da Silva Foundation will also honor East River Medical Imaging, a medical diagnostic imaging center in New York. East River Medical Imaging’s leadership in healthcare and their continued dedication to philanthropy serve a host of grateful benefactors. Their work emphasises how valuable a contribution it is possible to make when you care enough to step out.

It is not possible to name every person who deserves our recognition and gratitude. The foundation holds dear each and every person, no matter the form or weight of their contribution. We will continually express gratitude on behalf of the patients and their families benefitting from your contributions day after day.

Finally and with happy hearts, therefore, the foundation is proud to present the highlight of the entire evening. There will be an emotional first-time meeting between patient and donor. Tancrede Bouveret, a 13 year-old former leukemia patient currently living in Brazil, will finally be able to meet his life-saving bone marrow donor from Madison, WI. The patients and their generous donors may not be introduced until a full year after a successful transplant, so this is a momentous occasion for both of these brave souls.

Icla’s Legacy

In the past quarter century, the Icla da Silva Foundation has been responsible for the registration of over 500,000 potential bone marrow donors. Supporting the Be The Match Registry, it is especially important to help minorities increase the pool available for bone marrow donation. Since inception, the foundation has also facilitated more than 600 bone marrow transplants; and assisted over 2000 patients and their families with emotional, logistical and financial support.

Did you know?
There are only 30 million registered potential bone marrow donors on the Worldwide Registry.

If you wish to contribute to the foundation’s noble legacy, please consider the following ways to become involved:

The patients, donors, volunteers, contributors, supporters, dedicated researchers and medical professionals involved at the foundation will gladly attest to the spirit of camaraderie which has formed within its inner circles. Commitment to granting others a second chance at life fosters a deep connection between ordinary people doing extraordinary things in the world. The foundation, too, understands the blessing of knowing this kind of love exists in the world.

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Sweet Caroline

The screen shows a sunny day in Austin, Texas, with its classic blue skies and a light breeze rustling through emerald leaves.  A bubbly, warm personality with a sassy grin is bouncing through a back garden, climbing trees, playing silly games and laughing at it all.  As she waltzes through life with a carefree smile under her beautiful curls, Caroline Renee Dill exudes the unquenchable energy of the healthy child into which she has blossomed.

It was a rough start for this smiling girl and her family, but Caroline has completed her arduous journey to full health with flying colors.  In 2005, at three months old, Caroline came down with a dangerous fever and was rushed to the emergency room.  She was eventually diagnosed with chronic neutropenia (SCN), a rare blood disorder.  It is characterised by low neutrophils (white blood cells), which are essential for the body to fight off bacterial infection.  SCN usually presents with fevers, sores and inflammation in the mouth and a strong susceptibility to recurrent infections.   Learn more about SCN here.

Consequently, Caroline has received a shot of neupogen, a white blood cell booster, every day of her life since she was just three months old.  At five years old, doctors discovered her white blood cells were starting to deform.  They recommended the family prepare for a bone marrow transplant once a suitable match could be found. Happily, Caroline was one of the lucky few for whom a perfect bone marrow match was quickly located; and the procedure went ahead in the summer of 2010.  

John and Teresa Dill, Caroline’s committed and loving parents, have walked beside their brave daughter along this difficult road, too. Working around their jobs, other children and daily commitments, they have been her rock and kept her spirits high on the dark days.  Her parents even tag-teamed each other to juggle work and family during Caroline’s long hospital residence in the summer of 2010.

For her time in hospital, Caroline received a fixed central line instead of an IV  point. The central line housed three ports, which allowed her to absorb multiple medications concurrently.  This also alleviated the need to have needles poked into her hands before every treatment.  She also received her chemotherapy through this port, as well as the bone marrow transplant itself.

After a successful bone marrow transplant, Caroline required extended time in a sterile environment.  She spent sixty days in quarantine during the recovery period to ensure her body had the best possible chance of accepting the transplant.  It was critical to keep her away from bacterial or viral infection sources while her immune system was at its lowest levels.

Day 8 post-transplant, Caroline awoke with a high fever, elevated heart rate and trouble breathing. After several tests, they discovered aspergillosis in her lungs, a serious condition at the best of times.  She stopped breathing and was treated with slow-release medication into her weakened little body.  Three days and a host of prayers later the fever broke. Caroline started back on the road to recovery, much to the relief of her extensive support team.  Seven years down the line, she is now leading a normal, healthy life.

Katelyn, Caroline’s sister, was one of many family members and friends alike who visited the hospital, sent messages of encouragement and lent support during Caroline’s journey.  It was a common occurrence to find Caroline playing soccer in hospital hallways, posing with family and friends who came to visit at the window, displaying her amazing variety of funky wigs and smiling through the pain. She even volunteered for a video clip, tutorial-style, of how to swallow her daily pills (one time she took three in one go!)

Caroline had the privilege of meeting her bone marrow donor, Eduardo Dombrowski, at an Icla da Silva Foundation event a few years ago.  Eduardo is a Brazilian from Florida, now living in San Francisco, and one of the generous donors listed on the Bone Marrow Registry.  He took the small step of registering, went through the painless testing process and didn’t hesitate when finally called upon to save a life – Caroline’s life.  These are the kind of people the Icla da Silva Foundation love to have as part of the team as we work together to recruit donors for the Be The Match Registry.

Want to save a life like Eduardo? Register as a bone marrow donor on the Be The Match Registry today.

Three years later, Caroline’s reflection on the journey to health reveals how much she appreciated the support of all the special people in her life.  Her time away from the machine, not being hooked up to leads during ‘free time,’ remains one of her fondest memories from the lengthy hospital stay.  Caroline’s generosity of spirit is clearly evident in her idea to provide someone else who is ill with her brand new iPad, “maybe I should donate my iPad to children so they can play on it for Christmas.”

Now she wants to share her story of victory with the world, in hope it will inspire and encourage others who are facing seemingly insurmountable challenges. Clearly, Caroline is a little girl who is adored by many hearts already. She continues to inspire us with her zest for life despite the hardships of illness.  We salute you, Caroline!  

Watch Caroline’s Story:

 

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We Remember the Tate Family

Last month was National Sickle Cell Awareness Month.  In recognition, we remember the courageous Tate family from Maple grove Minnesota.

The first two daughters of Yalonda and Gary Tate both had sickle cell anemia.  The life threatening disease meant bi-weekly trips to the hospital for blood transfusions and follow up visits for both girls.  People with sickle cell disease have abnormal hemoglobin in their red blood cells. Hemoglobin is a protein that carries oxygen throughout the body.  When the cells are irregularly shaped, like sickles or crescent moons, the cells can get stuck and are not able to carry adequate oxygen throughout the body.  Sickle cell disease is most common among people of African descent.  The only cure is a matching bone marrow transplant.

Madison, the oldest daughter (now 23), had a bone marrow transplant in 2004, which failed.  The doctors told the Tates that a sibling bone marrow match was their best hope.  Since their daughter Olivia was also sick, she was not an option for a transplant.

The Tates decided to have another baby.  They went through in vitro fertilization, testing Yolanda’s eggs until they found one free of the sickle cell trait.  In November of 2005, the Tates gave birth to their 3rd daughter, Quinnlyn.  At the age of six months, Quinnlyn gave her oldest sister Madison a gift of life.  Stored stem cells from her umbilical cord were used in a transplant, giving life to her older sister.

Olivia (now 19) was also in need of a matching bone marrow transplant.  Fortunately, a 100% match was found.  The donor, Sidnei Barbosa, had registered to become a donor through the Icla da Silva Foundation.  The foundation is the largest recruitment center for the Be The Match registry, focusing almost exclusively on patients with a racially diverse background.

Joining the registry, especially for people from minority communities, is important. Olivia Tate was extremely fortunate to find a match to her blood type, but there just aren’t enough potential donors of African decent on the registry.  The African American community is underrepresented, which makes it more difficult to find a matching donor.  You can register here and help save a life.

Four years ago, Olivia met her donor for the first time at the Icla da Silva Foundations Hope Gala in New York City.  You can view the heart-warming story here:

The Icla da Silva Foundation is holding their 25th Anniversary Hope Gala on October 18, 2017.  At the Gala, there will be another special meeting between a patient and her donor.  You can donate here to help us continue our mission of saving lives by recruiting bone marrow donors and supporting patients and their families with diseases treatable by marrow transplants.

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Volunteer Highlight: Omari Jinaki

The Icla da Silva Foundation hits the jackpot when it comes to selfless volunteers who unite behind the quest we are all passionate about: a second chance at life through a perfect bone marrow donor match.  It is not every day, however, one comes across a soul which affects the world as powerfully as this one does.  Movers and shakers, volunteers like Omari Jinaki, are the backbone of our organization, without whom the unending workload would quickly overwhelm.

There is something pure and special about Omari.  His career in advertising perfectly suits the vibrant personality and charming sincerity he radiates when you first meet him.  In 2009, Omari was offered a golden opportunity to internship at Ogilvy & Mather in New York.  An incredible upside to the internship was the chance to fall under the mentorship of executive Marlon Layne, described by Omari as “vibrant, effusive, emotive, purposeful, driven, diligent, far-reaching, and culturally bold. It was inspiring to be around him and to emulate him.”

Not long afterwards, Omari had moved on to bigger and better things, fueled by the success he drew from Marlon’s robust leadership and continuous encouragement.  His beloved and awe-inspiring mentor was then unexpectedly diagnosed with a blood cancer only curable through a successful bone marrow transplant.  Shocked and uninformed about the implications, Omari began a search for information, determined to come to a full understanding of what his friend and mentor might be facing.  

In the ensuing weeks and months it became clear something urgent needed to be done.  Enquiries led Omari to the realization that Marlon, and others like him, needed dedicated assistance, a lot of prayer and a small dose of luck if a perfect donor match was going to be found on time. Left waiting for something so important seemed inhuman and cruel.  Could finding a perfect match be so difficult?  

It turns out that for minorities, with a limited pool of donors, and society’s preconceived misconceptions about what it takes to be a bone marrow donor, it can be.  Not to be deterred, optimist Omari stepped forward and chose action over complacency.  He connected with the Icla da Silva Foundation, the largest recruitment center for the Be the Match bone marrow registry in the United States.  From that moment forward, he remained dedicated to raising funds, creating public awareness and recruiting potential bone marrow donors.  

The Icla da Silva Foundation deeply appreciates Omari’s selfless involvement and hard work, aligned with the cause so close to our heart.  Sadly, Marlon was unable to find a match on time and succumbed to the disease soon afterwards.  Omari and his colleagues embarked on a bold campaign in loving memory of the great man they all admired.  The aim of the movement was to spread the word about the prevalence of blood cancers, the need for a greater donor pool and the plight of those with an unknown amount of time left to live a full and wonderful life.  

Amazingly, the first three years the group was able to raise almost $42,000 and sign up 160 new bone marrow donors to the Be the Match Registry.  On 1 July 2014, Omari and his colleagues were part of an awareness-raising showcase on Spectrum News NY1.  The inspiring piece highlighted the need for both stateside and international bone marrow donors, clarifying common misconceptions about the bone marrow testing and donation processes.  A reassuring demonstration on how simple it was to test as a match drew large public attention.  It cleared the path for thousands of potential new donors for bone marrow registries like Be The Match Registry.

In the time working with the Icla da Silva Foundation, Omari has seen how bone marrow transplants work.  He has met patients saved through a successful match.  He spends time with these families and sees the results with his own eyes. ”It is incredible to see someone come back to life; and regain their zest, energy, and spirit.”

Omari pours his time and energy into fundraising efforts such as the Matchmaker 5K Run/Walk benefitting the Icla da Silva Foundation.  Omari has been running this particular race since 2011 and continues to return year after year, even after he having relocated away from New York.  He was drawn to this cause because a cure exists.  It only requires understanding that the larger the registry of potential donors, the greater the chance a match will be found and a patient cured.  “I was one of those unaware healthy people.”

Omari’s contributions are truly invaluable and his attitude is inspiring. It seems fitting to end this tribute with his own words of encouragement:

“With your help, I hope we can bring more live-saving treatments to patients searching for a marrow match.   Your donation goes directly to register a more diverse array of marrow donors on the registry, which increases the chances of each patient finding the live-saving donor they need. I remain incredibly appreciative of the long-time, ongoing supporters, who support Icla because they support me.  I will never forget my first donor, Kenny Alexander, who sparked for years of life-saving treatments for people around the world.  Immense thanks.  Spread love.”

Do Something Different

You too can change a life today by:

Even the smallest amount helps us continue our efforts to grow the registry and provides financial assistance to patients in need.

Of course, you could also become a volunteer and participate in the heroic efforts displayed by Omari and so many other valued members of this worthy cause.

We thank you Omari Jinaki.  

We appreciate your continued support of the Icla da Silva Foundation and recognize your unique enthusiasm for love and life.

 

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Donor Story of Heart and Marrow

The Icla da Silva Foundation has the unique privilege of meeting extraordinary people on a regular basis.  From inspiring patients and the families who support them, precious volunteers who keep the wheels turning, financial contributors with hearts of gold to donor angels who pledge a part of themselves to save the lives of others.  Kala Maxym is one of the donors whose invaluable contributions – including her personal bone marrow donation – has changed, not only her life, but the lives of countless others, too.

The Kala We Adore

Donning a gorgeous smile as enchanting as her captivating voice, Kala is one of those people who illuminates the world with hope and beauty.  Armed with courage and determination, Kala’s life has been dedicated to making the world a little better in whatever way she can and the Icla da Silva Foundation is proud to have her as part of the family.

Before her involvement with the Icla da Silva Foundation, Kala’s vibrant way of life took her on several adventurous pursuits and multiple career avenues.  Woven into her tapestry there are mysterious mentions of volcanoes, gems, fine wines, presidential performances, exotic linguistics, grant writing, customer success management and even a stint at the Criminal Division of the United States Department of Justice.  Boring is certainly not a part of her extensive English, Spanish or German vocabulary.

Her entrepreneurial spirit is one example of the diversity of her skills.  Five Senses Tastings started as a dream to bring people a holistic experience of music, wine and other irresistible stimuli.  It engages all of the senses and, in Kala’s own words, “transforms the way we think about, experience, and sense the stories of our lives.” This is part of her legacy now; giving the world something better than ordinary.  A beautiful way to do all of life, don’t you think?

Of Heart and Marrow

A diversely talented woman, Kala is no stranger to using her gifts for the upliftment of others.  Along with the awesome work she does for us at the Icla da Silva Foundation, she has also organized and performed recitals for numerous other organizations.  Some of the those which have benefitted thus far includeDoctors Without Borders, Colegio Insular Robinson Crusoe (Chilean Earthquake Relief), Pamoja Tunaweza (Together We Can) and the ACLU of Southern California, among others.”

Not long after meeting her, it becomes clear one of the causes Kala is most eager to share is that of bone marrow donation.  Her tireless efforts to increase public awareness are part of the reason the Icla da Silva Foundation are extremely grateful to have her on our team.  From creative fundraising efforts to her invaluable role on the Board of Trustees, Kala not only brings unlimited energy to an exhausting mountain of tasks and checklists, but has also had first hand experience of the joy that comes from saving a life.

Spending her childhood in Germany and then living in the United Kingdom, Kala was only a graduate student in Boston when the story began.  A regular blood donor, she was shocked to learn of an unfortunate setback.  Due to her time living outside of the United States, the regulation change now banned her from donating blood locally – for life.  

Dismayed at the turn of events, Kala was asked if she would consider registering as a potential bone marrow donor instead, as the same travel restrictions did not apply.  Luckily, she said yes.  A short and painless testing process ensued and she was officially placed on the Be The Match Registry as a potential bone marrow donor.

A short two years later Kala received the telephone call that would change her life.  She was a perfect bone marrow match for another female; the time had come.  Without hesitation, Kala remained true to her nature and said yes once again.  

After some further testing at the Dana Farber Cancer Institute, there was no time to lose and the bone marrow donation process began.  Lasting about a week from start to finish, the donation process is fixed forever in Kala’s mind “with wonder, awe and, perhaps strangely, with extreme fondness and love.”   You can read more about her experience at Everyday Health.

After a quick recovery, free of side effects, Kala’s life resumed its frenetic pace and time marched on.  However, a little over a year later, Kala received a simple message from the woman herself.  The message emphasised how Kala’s small act of mercy had been the greatest gift she could have possibly given to another human being: a second chance at life.

“Hello Kala. My name is Peggy, and you saved my life.”

Kala describes her joy and gratitude at being a part of this entire process.  Truly grounded, she refuses to accept the title of heroine, insisting her actions were simply those of one woman supporting another; as it should be.  An honor and a privilege, indeed, but a simple of act of humanity made possible by the miracles of modern medicine.

How you can be involved

Kala and Peggy have walked a wonderful road together since the bone marrow transplant more than a decade ago.  Are you ready to make a difference?  If you like to join the cause, there are several ways in which you can contribute:

  1. Make a financial contribution.
  2. Sign up as a donor on Be the Match Registry.
  3. Become a volunteer.

Life is short. Make the most of it.

 

WATCH: Two young women share their experience of donating marrow

 

 

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Aksel the Great

Every now and again, there is a fairytale ending to a long and arduous tale of woe.  This is one of those stories worth telling, if only for the sheer inspiration of its character line-up.  The superhero is Aksel Johnsson, the Great Conqueror.

It all started with an impossible task that the mighty superhero was required to perform, against overwhelming odds, with limited resources; and,of course, enduring some dramatic flourishes along the journey.  At two-and-a-half years old, Aksel Johnsson’s life had only just begun when he was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH).  A genetic condition, HLH affects the immune system in which damaged cells are not being removed from the body as needed.  A normal body does this naturally, but Aksel’s condition caused his immune system to become overstimulated and rendered this process ineffective.  This in turn caused continuous damage to his tissues and organs, such as bone marrow, which lead to further complications in his little body.

At such a young age, the only chance Aksel had in overcoming the rare condition was to receive a successful bone marrow transplant and allow the body a fair chance at recovery.  In a great show of strength, Aksel’s dedicated fighting force, his Mamma Carla-Prado, and his Pappa Fredrik, rallied together to find a bone marrow donor.  From their home in Miami, Florida, the Scandanavian-South American family fought the HLH dragon, encouraging one another to keep going, to stay strong and to think big.  His parents described Aksel with words like ‘viking strong’ and ‘super hero’ as their brave son dealt with the plethora of challenges that unfolded.

A conquering attitude makes a whole lot of difference, as proved by the positive contributions from each member of Team Aksel along the way.  The home team worked tirelessly to find a donor for Aksel, drawing on every resource available and exploring every avenue.  They created their own website, shared the journey on a Facebook page and even reached out to the local media for support.  The Miami Heat feature helped spread awareness, widening the search for a bone marrow donor.

The heroes also joined hands with Malena Laughlin of the Icla da Silva Foundation, in the tedious search for a perfect match for Aksel.  The foundation is the largest recruitment center for the Be the Match bone marrow registry in the United States.  Unfortunately, not one of the 12 million registered donors presented as a compatible match at first.

Slowly but surely, however, the Icla da Silva Foundation was able to complete 165 marrow drives in honor of Aksel and our little superhero worked incredibly hard to contribute towards this process.  Miraculously, this led to a staggering 3,929 potential new bone marrow donors being registered to the Be The Match Registry.  Potential donors were signing up from the United States, Sweden, Monaco and the United Kingdom, all for Aksel.  What a superb legacy was being built by a viking-strong Aksel in his fight for life!

Shortly thereafter, Aksel’s doctor insisted on a swift course of action.  They could wait no longer for a perfect match to be found.  At a 60% match, Fredrik, Aksel’s father, began to prepare for the bone marrow transplant.  With the last-minute twist of fate every fairytale needs, a donor joined the registry and presented a 8 out of 10 match!  The 44-year-old hero agreed to donate his stem cells to Aksel, sparking celebrations all round as hope held out. Aksel received the bone marrow transplant in July 2016.

The viking-strong superhero was reborn at the Cincinnati Children’s hospital as his body was given a second chance at life.  A few months after the transplant, Aksel was showing reports of low engraftment – the process where new blood-forming cells start to grow and create healthy blood stem cells.   Never wavering from his chosen course, Aksel donned on his best viking face and a positive attitude as he took things one day at a time.

Victorious and inspirational, Aksel won his fight.  As at April 2017, his bone marrow transplant engraftment reached 100%.  Even though his immune system is still recovering, his prognosis remains firmly on the right track.   He will need continued treatment for another year, but Aksel and his hero team have beaten the HLH dragon.

Aksel the Great may only be a little boy, but strength and honor are boldly displayed in the way he lives.  On May 1, 2017, Aksel turned five.  The hero and his family still have a long road to walk, but the little viking continues to display a superhero attitude and he is getting stronger everyday – viking strong.  Aksel’s future looks bright.

If you were as excited as we were to hear about Aksel’s victory over HLH, please consider joining the registry as a potential bone marrow donor.  You could be the hero to someone like Aksel and save a life.  The process is simple.

If you are unable to register as a donor, but still wish to help, please consider supporting the Icla da Silva Foundation in other ways.

 

 

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