ABINGTON, Pennsylvania (WPVI) — A local teenager in need of a life-saving stem cell transplant is encouraging more people, especially minorities, to join the bone marrow registry.
Juwan Adams, 17, proudly plays the snare drum for the marching band at Abington Senior High school. He’s also on the national honor roll and a math tutor.
Unfortunately, he’s doing all this while also battling cancer. “It’s a little rough some times. There are some days you just want to be normal but other days realize you just have to keep fighting,” he said.
Join the registry for Juwan
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.
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 ItskowitchTeen Battling Leukemia Asks for Hispanic Community to Donate Bone Marrow – NBC DFW
Since April, 18-year-old Javier Guereca’s been dreaming of the day he’ll be told he’s matched with a bone marrow donor that can finally put an end to the leukemia he’s battled for a third of his life.
Guereca was first diagnosed at age 11. He’s spent more days in and out of the hospital than he can count, sometimes spending as long as two to three months there at a time.
join the registry for javierShortage of Bone Marrow Donors a Health Challenge for Minority Communities – NBCNews
7-year-old Asaya Bullock has a rare immune system disease, and the only cure is a bone marrow transplant. His parents have been searching for five years with no luck and are trying to raise awareness and encourage more African-American donors. Out of some 10 million potential bone marrow donors in the U.S., fewer than 1 million are African-American.
View the segment on NBC News.
How can you help Asaya?
join the registryA Match For Lavinia?
This is Lavinia, from Pingree Grove, IL, 48 miles outside of Chicago. This beautiful young girl is suffering from a rare, life-threatening, autoimmune disease and she needs your help.
Her cure exists. It’s inside you…one of you. We just don’t know which one. You may be the match that saves her life, you simply need to join the registry and agree to donate if you match.
join the registry
Lavinia De Oliveiria Santos has a condition called IFN-gamma receptor 1 deficiency. Her body is unable to fight off infections, some of which may be life-threatening. Her doctors have told the family that the best possible treatment is a stem cell transplant.
She currently takes six medications a day to help fight against infection. She also receives weekly injections to strengthen her immune system. Obviously, her parents are doing their best to keep the home disinfected in order to minimize the risk of any infection.
Looking For A Match
Her parents are a half match for Lavinia, but the doctors would prefer a 100% match. Her doctors are searching the Be The Match registry for an unrelated donor.
Becoming a potential donor is simple. You can register online by clicking the link. Once the registration is finished online, Be The Match will mail you a swab kit with easy-to-follow instructions on how to complete the process at home. When you return the kit in the mail, you will be included on the registry.
About 1 out of every 430 people included on the registry go on to donate to a patient. Only people identified as a genetic match for a searching patient are asked to donate blood stem cells.
“We urgently need more Latinos to join the registry so my daughter can find a match” -Gilmar Santos, Lavinia’s father
Lavinia’s search for a matching donor is more difficult because of her Brazilian ethnicity. People are more likely to match someone with the same ethnic background. Even though the Be The Match Registry is the largest and most diverse registry in the world, only 7% of the 19 million+ members identify as Latino. Unfortunately, the result is that Latino patients like Lavinia only have a 46% chance of finding a fully matched donor, compared to a 77% chance for those who are White. There simply aren’t enough people of various ethnicities included on the registry. Please add yourself, and ask your friends and family to do the same.
join for lavinia
Lavinia turned 6 in July. She loves to dance, sing and play as a princess. She enjoys vanilla ice cream and of course, she loves Brazilian food. Lavinia is crazy about animals and insists that she will be a veterinarian when she grows up. She is a girl with many dreams and we would like to see them all happen.
join.bethematch.org/LoveForLavinia6 year old Lavinia Santos loves to sing and dance and has many hopes and dreams. She also needs your help. Lavinia was diagnosed with IFN-gammaR1 deficiency when she was 2, and needs a stem cell transplant to survive. Her only hope is an unrelated donor, and we are asking everyone 18-44 years old to join the Be the Match Registry to possibly save Lavinia or another patient in need.Just click on join.bethematch.org/LoveForLavinia. You will register and fill out a fast online form and cheek swabs will be mailed. It’s that easy! Please share this post publicly and help Lavinia find her match!❤️
تم النشر بواسطة Love for Lavinia في الخميس، ٦ ديسمبر ٢٠١٨
Please join the registry and help us find her cure. If not for Lavinia, than for one of the 14,000 other patients who are desperately searching for their match.
join the registry
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.PATIENT UPDATE: JULIAN MORALES
Please read an update about our patient, Julian Morales as reported by NBC Miami here.
You could be his match, register to become a bone marrow donor for Julian at https://icla.org/join/SaveJulianPatient Story: Tancrede Bouveret
On October 18th, Tancrede Bouveret will meet his life saving bone marrow donor for the first time, at the Icla da Silva Hope Gala in NYC. Bone marrow patients are not able to meet their donors until at least one year after a successful transplant and the meetings usually bring tears of joy.
About Tancrede Bouveret
Unfortunately, Tancrède was born at the Naval Medical Center of San Diego on May 14, 2004. His father, Luc Bouveret, always dreamed of having a child, and so with the help of a surrogate in California, Tancrede entered the world.
Unfortunatley, Tancrede was born premature, at just 27 weeks. He spent two months in critical condition at the hospital until his father Luc was able to take him home to Paris. Once back at home, Luc found it necessary to quit his job so that he could care for his son and give him the attention that he needed.
Soon after, their family expanded when Luc met his partner, David. At the age of 4, the family moved to Sao Paulo, Brazil. Luc and David decided to have another child and engaged the same surrogate in California. Tancrede, now at the age of 6, gained a brother, Elzear.
The family were living a happy life in Sao Paulo until March of 2015. Tancrede was diagnosed with Myelodysplastic Syndrome (MDS), which progressed into Leukemia.
The fathers were notified that their son had less than a 10% chance of survival. The only cure is to receive a matching bone marrow transplant. Most families have the natural assumption to use a family member, but siblings only represent a 25% chance of a match and his brother Elzear was not compatible.
Luc and David began the search to find a bone marrow donor for their son. They held drives in Brazil and utilized social media to create awareness. They gained the attention of Brazilian celebrities and soccer players, and many people registered to become donors. They requested the help of friends and family in France and the Icla da Silva Foundation helped spearhead the search in the United States.
After several months, a 90% match came through. With great hope, the fathers asked to wait a little bit longer for a 100% match. Three weeks later, in July of 2015, a 100% matching donor was identified in Madison, Wisconsin. Tancrede received his transplant on July 29, 2015.
Due to complications, he spent almost 2 years in the hospital. His body needed an additional transplant of lymphocytes, which the donor agreed to, without hesitation.
Tancrede is now 13 years old and despite his illness he continues to lead a normal life. Although still in recovery, taking an abundant amount of medicines, antibiotics, monthly chemotherapy and blood treatments, he is persistent on keeping his above average attendance in school. Tancrede has a knack for learning. He speaks four languages, is socially conscious, and has his own YouTube channel.
His fathers insist that none of this would be possible with the Icla da Silva Foundation and his life-saving bone marrow donor.