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At 6 AM on Sunday, March 10, representatives from the Icla da Silva Foundation were at the Calle Ocho Music Festival in Miami, Florida.
For the team members who attended, it had nothing to do with music. It was all about supporting the family of Julian Morales, with the hope of finding a matching stem cell donor in order to save his life.
It was about Saving Julian.
It was about setting up tables and organizing volunteers so that more people understood the need to join the Be The Match bone marrow registry. It was about eliminating the fear of joining and explaining the fact that only 7% of people on the registry are Hispanic. This is why patients with a Hispanic or Latino background have a more difficult time finding a match. There aren’t enough potential donors on the registry.
Being at Calle Ocho was about doing everything we can to give Julian a 2nd chance at life.
It was about adding more potential life-savers to the registry.
Watch Julian and his Mom on NBC Miami
Julian suffers from a rare, life-threatening blood disorder called Dyskeratosis Congenita and bone marrow failure. He has been suffering for 4 years. Since there is no match in Julian’s family, they need to find a donor who is not related. They have been searching for a match for 4 years. There is still no match for him on the Be The Match registry.
As you would expect, Julian’s mother Mayra is desperate to save her son’s life. She is pleading for help from the Hispanic community, “…it’s a matter of life and death.”
For the Icla da Silva Foundation, this past Sunday was about not giving up. We can listen to music later.
Right now we need to find a matching donor for Julian.
You can join the registry by clicking the link. You will receive a kit in the mail which is used to swab the inside of your cheek. When you return that kit to Be The Match, they will test your HLA type to see if you are a potential match.
You or someone you know may be a match for Julian. Please join and share with others.
JOIN THE REGISTRY
From: Go Latinos Magazine
It seems simple enough – HELP YOUR NEIGHBOR
Miami, Florida – The Homestead City Council, in the hometown of 7-year-old patient Julian Morales, passed a resolution encouraging residents to join the #BeTheMatch registry to see if they are a lifesaving match for their little neighbor.
You can join the registry on behalf of Julian here:
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.
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.
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.
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.
Patient Update: Asaya Bullock
Asaya loves karate, the color blue, and his little sister Anaya. They are best friends and they get along like two peas in a pod. He is a fun-loving little boy who is surrounded by loving parents and the support of family and friends, but he needs your help.
We have been working with Asaya Bullock and his family since 2014. Asaya has been the focus of 163 bone marrow donor drives, where we have registered 2487 potential donors on his behalf, and we continue to stand by his family for emotional, logistical and financial support. Unfortunately, these efforts have not been enough to find his cure.
This beautiful little boy needs your help.
At the age of 8 months, Asaya was diagnosed with a rare autoimmune disease called I-PEX. His parents were told he would not live past the age of two. You can read more about his story here.
In July, Asaya will be 7, which means that he has been living with this rare disease for almost seven years. He is enrolled in first grade, but he misses class often due to his compromised immune system. This past winter was rough on the family; the flu lasted for 6 weeks and Asaya lost a lot of weight. He receives IgG treatments (Immunoglubulin replacement therapy) every other week, administered by his mom so they don’t have to spend so much time traveling to the doctor. The treatments hope to increase the IgG levels in his blood, which to help fight infections.
Asaya is in desperate need of a matching bone marrow donor. His father Vincent is African American, and his mother Charlene is West Indian Caribbean. Unfortunately, Asaya’s ethnicity is under represented in the bone marrow registry. Not enough potential donors have joined, so a match has not yet been identified. Could you be his match? Do you have friends or family that could be a life saving match? Please consider joining the registry here http://join.bethematch.org/TeamAsaya. Share this post with your social media network and ask your friends to join using the links below. Get involved and host a marrow drive in your community to register more potential life savers. Learn how to do that here.
Thanks for reading, registering, and sharing. We need to work together to find a match for little Asaya.How to Become a Bone Marrow Donor
You could be a life-saving match for a patient in need of a bone marrow transplant. Joining the Be the Match Registry is the first step to become a marrow donor. See our infographic below to learn about how you can sign up to becoming a bone marrow donor and the steps of the donation process.
Click here to join the Be the Match Registry.
Click here to learn more about becoming a bone marrow donor.
Celebrating 25 Years Saving Lives
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.
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.
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”
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.
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.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.
Patient Story: Julian Morales
Early morning traffic on the speedway is already in full swing and the Miami summer sunshine radiates on the tarmac, bouncing onto the palm trees that line the streets. Nearby mangrove forests are teeming with life as the birds greet another spectacular sunrise on the East Coast. Beautiful golden rays illuminate today’s gift: more time.
Michaelangelo, Leonardo, Raphael and Donatello, four pizza-loving turtle heroes, are rumored to live in the sewers around here; at least in the active imagination of this fun-loving five-year-old. As another balmy day sets in for the small community of Homestead, Florida, Julian Morales and his amazing family make their way towards another busy day. For chocolate ice cream-loving Julian, Florida’s summer afternoon heat should be the perfect excuse to ask Mom for a cold treat to tingle the taste buds. Will the cheeky smile which makes his eyes sparkle do the trick?
Julian has spent most of his five years in this sunny paradise; with his Mom, Mayra, and his Dad, Dany. He has a wonderful relationship with his doting parents and thinks of his sister, Bella, as one of his best friends in the whole wide world. Perhaps there are no masked Teenage Mutant Ninja Turtles sporting nunchucks, katanas or a bo staff around here after all; but for little Julian Morales there are plenty of other heroes on the move around the city.
Unlike his peers, Julian’s first five years have been tough. It has been an emotional roller coaster for his dedicated parents as a search for a diagnosis of Julian’s condition has gathered momentum. Together with a supportive church and community, the journey has taken the family through a number of trying obstacles.
Finally, after a year of extensive visits to various health professionals, it was advised the family take a trip up to Boston. Here the brilliant specialists at the Dana-Farber Cancer Institute in Boston, Massachusetts were able to confirm the diagnosis as a rare condition called Dyskeratosis Congenita (DKC). This is a bone marrow failure disorder and results in low red or white blood cell counts, low platelet levels or a mixture of these three conditions.
Julian cannot attend school for the foreseeable future as his strained immune system is severely compromised. Instead, he spends time at home with the family he loves; learning, reading and playing the way most children his age love to do. He also adores his church community at Christ Fellowship, Miami. Check out his awesome puppet show about Adam, Eve and the snake-snake-snake here.
A bone marrow match would enable his doctors to cure his blood condition, the first step towards dealing with the Dyskeratosis Congenita itself. Ancestry and genetics determine the protein mixtures in the blood. Unfortunately, since Julian is of both Mexican and Nicaraguan descent, neither of his parents presents as a perfect bone marrow match. A consolation for Julian, however, is that his condition was diagnosed a little earlier than most, immediately kicking off the search for a suitable donor.
The Morales family teamed up with Malena Laughlin of the Icla da Silva Foundation on an urgent quest to find a bone marrow donor for Julian. Being the largest recruitment center for the Be The Match Registry in the United States, the Icla da Silva Foundation is dedicated to helping people like Julian. In fact, people of mixed heritage are a top priority for the foundation, since these patients only have access to a limited genetic pool of volunteer marrow donors in the bone marrow registry.
To date, there have been 96 Bone Marrow Drives to find a match for Julian, which resulted in an impressive count of 1100 potential donors. The perfect match for Julian is yet to be found, however, and his team stands by him, persevering in hope. Until a suitable match is discovered, the family needs to regularly travel up to specialists at the Dana-Farber Cancer Institute in Boston, Massachusetts.
Despite the fact Julian’s perfect bone marrow match is still to be found, the Bone Marrow Drives miraculously provided matches for a number of other bone marrow patients along the way. The time and effort of a dedicated family and community team, together with the Icla da Silva Foundation, is never wasted. Would you consider registering to become a bone marrow donor for Julian and others like him? The process is simple and the procedure is painless.
Follow Julian’s story on his Facebook page for further updates on the Morales family’s search for a match. As Julian’s illness progresses, complications will increase. Julian needs a donor as soon as possible. Please help us make a difference for Julian and his family.
If is it not possible for you to become a bone marrow donor, the Morales family has set up a GoFundMe account. Any and all contributions to the fund are welcome. These generous donations support Julian’s numerous medical trips to Boston and his ongoing medical expenses not covered by insurance.