The UCF Challenge: Pledging to Save a Life
Throughout the month of April, fraternities, sororities and mentorship clubs at the University of Central Florida are challenging each other. Together with their brothers and sisters, they are pledging to “Save a Life” by joining the Be The Match bone marrow registry.
The Icla da Silva Foundation is the largest recruitment center for the Be The Match Registry. We add potential stem cell donors to the registry. A stem cell transplant is the only cure for rare diseases like Sickle Cell, and blood cancers like Leukemia and Lymphoma.
The difficulty lies in finding a donor who ‘matches’ the genetic makeup of a patient.
The Diversity Challenge
A challenge for the registry is consistently maintaining an active network of committed donors. This is especially true for donors who are ethnically diverse. Blood cancer patients from every ethnic minority are under-represented on the national registry. There simply aren’t enough diverse donors included on the registry.
We are working to change this.
A White patient has a 77% chance of finding a matching donor on the registry. But Hispanic patients only have a 46% chance. Asians have a 41% chance and African American patients only have a 23% chance of finding a matching donor. This means that 3 out of 4 Black patients may not survive their disease because they can’t find a matching donor.
The COVID-19 Challenge
There are (3) requirements for joining the national registry. We need to assure that you are: (1) healthy, (2) aged between 18 – 44, and that you are (3) committed to saying ‘”yes” if you match a patient in need. Meeting all three requirements represents the greatest chance for a successful transplant.
Historically, we have recruited potential donors at ‘live’ drives. We held these drives at university campuses across the country because it represented the best chance at meeting all three requirements.
Since the onset of COVID-19, all live drives have been cancelled.
But lives are at stake. Patients are still searching for a donor. We cannot stop adding committed donors. As a result, our recruitment has gone social. We are using social media to educate potential donors and keep the registry active.
The UCF Challenge
The following organizations at the University of Central Florida (UCF) are challenging their members, and each other, to Pledge to Save a Life throughout the month of April…and we are grateful.
Delta Epsilon Psi Fraternity
Asian Student Association at UCF
Delta Phi Omega Sorority
The Diversified Greek Council at UCF
Mu Sigma Upsilon Sorority
Crown to Crown Girls Mentorship
These active and engaged students will be using their social media platforms to help us recruit more donors to the Be The Match registry. We will share their videos and activity on our social pages in the coming days and weeks.
Help them succeed in their efforts. Join the registry on their behalf.
pledge to save a life
Watch our Facebook page for the first video installment from the brothers of Delta Epsilon Psi at UCF.
Written by: Bret ItskowitchWhat Is It Like To Give To A Stranger? – A Bone Marrow Transplant Story
Have you ever given to a complete stranger?
to Give [giv] verb: to freely transfer possession of something to someone: to hand over, without expecting compensation
Michael Powell is a “giver.” He regularly donated blood. He also donated his bone marrow. Twice. Once with a stem cell transplant, and again through a bone marrow transplant. He gave, not knowing where, or to whom it was going. He is a giver.
In 2007, while at a company blood drive in NYC, he met some folks from the Icla da Silva Foundation. They were asking people to consider joining the Be The Match bone marrow registry. Most blood cancer patients, people with varying forms of leukemia, lymphoma, or sickle cell, don’t have a matching donor in their family. They require a transplant from a stranger in order to survive. Their doctors search the Be The Match registry, looking for a matching donor.
On the day in 2007, after he finished donating blood, Michael joined the bone marrow registry. He filled out some forms, swabbed his cheek, and was entered onto the registry. It was that simple. The process is now digital, and they mail the swabs to your home, but anyone between the age of 18 and 44 can join.
Michael agreed to donate his stem cells or bone marrow, should the need ever arise.
Matching and the Challenge
Unfortunately, that need arises every day. Approximately 14,000 times every year. The challenge is in finding the perfect “match” for those patients in need of a transplant.
Only one out of every 406 people on the registry will match and donate. A match is usually determined by a person’s ethnic ancestry. An African American patient is most likely to receive a successful transplant, a perfect match, from an African American donor. Michael wasn’t aware of it at the time, but African American donors are in short supply. For the African American patients with a blood cancer or sickle cell, only 23% are able to find a match on the current registry. By comparison, Caucasians are able to find a successful match 77% of the time.
There simply aren’t enough potential donors included on the registry, especially donors of ethnic diversity. The Icla da Silva Foundation is doing its best to change that by specifically holding registration drives within diverse communities.
You can join the registry by clicking the link. You may match a patient in need.
join the registry
Michael’s First Bone Marrow Donation
In 2013, six years after joining the registry, Michael received a call that he was a match. He had forgotten that he was even on the registry. Be The Match explained the process and asked if he would be willing to donate his stem cells through a PBSC donation.
They scheduled a check-up, to make sure he was physically fit, and organized some tests to ensure he was a perfect match. The donation process includes injections of filgrastim, which helps increase the number of blood-forming cells in the body. Be The Match organized a visiting nurse, who came by his apartment daily, for the filgrastim shots.
Five days later, he donated at Memorial Sloan Kettering hospital in NYC. It took about 4 hours. His blood was removed through an intravenous needle in one arm, passed through a machine that collected the blood-forming cells, and the remaining blood was returned to his body through a needle in the other arm.
Michael told me that Be The Match took care of everything. They offered to have someone go with him to the hospital. They organized a car to pick him up and take him back home. They even paid for a meal for him and a friend after his donation.
He insists the process was easy and pain-free. He had some joint stiffness for a few days, but he would recommend that everyone join and donate if they are offered the opportunity.
The next step was waiting to hear if it was successful for the patient.
Unfortunately, shortly after the transplant, due to complications from their cancer, the patient passed away. Michael was greatly affected by that news. He says “it meant so much for me to give, but to learn that the patient passed away, that was very heavy on my heart.”
Michael’s Second Donation
In 2017, he received a second call. He was a possible match for another patient.
Again, Be The Match kept in close communication and organized everything for him. They scheduled physical exams and blood tests.
While waiting to see if Michael was the best match, the patient had complications and the doctor indicated that this time, a surgical marrow extraction was the preferred method.
Michael had never stayed in a hospital before, and he had never had surgery.
Still, he agreed that he would donate.
When I asked him why he shrugged and said to me “Someone needed help and it was an opportunity for me to help that person…I couldn’t think of a reason not to do it.”
They scheduled surgery for June at Memorial Sloan Kettering, where they would extract bone marrow from his pelvic bone. He was anxious. Understandable so.
Michael tells me that the nurses and doctors at the hospital were all incredible. Answering all of his questions and making sure he was comfortable with his decision to donate his bone marrow. Right up to the very last minute, the doctor and anesthesiologist asked him if he was still comfortable going through it.
Once again, Michael said yes.
On June 1, 2017, at Memorial Sloan Kettering hospital in New York City, Michael donated his bone marrow through a surgical procedure. On June 2, a sickle cell patient received Michael’s bone marrow in a transplant at Nationwide Children’s Hospital in Columbus Ohio.
Always positive, Michael remarked that during the surgery, it was the best sleep he had ever had. He was emotionally relieved that it was over; physically, he was stiff.
Again, I kept pushing Michael about the why. I think he grew tired of me asking. His response was direct and to the point – “I didn’t think of why, I thought of how, and when do you need me. I knew I wasn’t going to be harmed from it.”
I still find his perspective to be remarkable. Michael believes that we are all connected. It is very important to him. He tells me that “we all have a chance to make a difference in someone’s life.” While that is very true, unfortunately, many people do not act on it.
Michael Powell did, and he made a difference in someone’s life. We are forever grateful.
After a transplant in the United States, the donor and recipient are not allowed to meet for at least a year. On October 17, 2018, 16 months after the bone marrow transplant, Michael was invited to the annual Icla da Silva Hope Gala. It was at the Gala that he met his patient, Aunesti Sullivan.
Every year at the Gala, we introduce patients and their donors to each other on the stage. It was the first time that Michael and Aunesti met. It was an emotional experience for everyone in the room.
Aunesti is a 13-year-old girl from Toledo, Ohio. She was born with Sickle Cell Anemia, and as a result of the Sickle Cell, was also suffering from Avascular Necrosis (AVN), or brittle bone disease.
Aunesti is doing very well. She is active, back in school, and living the life of a teenager.
Michael is happy to have made a difference in her life. He tells me they keep in constant contact via text and phone. He has agreed to work with us to help spread the word about the importance of joining the registry and staying committed to donate if you ever match a patient In need.
Anyone between the ages of 18 and 44 can join by clicking the link below.
join the registry
Thanks for reading, and thank you to Michael for making a difference in someone’s life. We are all connected.
Written by Bret ItskowitchSearching for a Bone Marrow Donor – Guided by Angels
Life is a series of ups and downs. For some, it’s not an even balance, but we keep the faith and find a way to move forward. This is the story of Naileen Colon. Naileen faces many struggles, but she has faith in the guidance of her angels.
Naileen grew up in Ponce, on the southern coast of Puerto Rico. At the age of nine, she was diagnosed with megaloblastic anemia, a condition in which the bone marrow fails to produce mature red blood cells. She maintained a healthy lifestyle to treat it. She lived a pretty normal, happy life for the next 15 years. She got married, had a baby and kept moving forward.
Unfortunately, in 2013, Naileen began to feel very weak. She was always tired and she was struggling with depression. After visiting her doctor, she was diagnosed with Chronic Lymphocytic Leukemia (CLL), a cancer of the blood and bone marrow.
Unfortunately, it was barely more than a year when she had her first relapse. This began a downward spiral for Naileen.
She had to resign from her job, her husband left, and she moved back into her mother’s house with her son. Moving back home was a very difficult transition. Her son Onix is autistic, and requires a lot of attention. In addition, her mom was ill and constantly in and out of the hospital. Naileen struggled to find a balance between taking care of her son, her mother, and herself. She held onto her faith and remained confident that God would not leave her side. She was being guided by angels.
Her First Angel
In 2015, it was determined that her blood transfusions were not working as planned. Her cells were not reproducing. Naileen was advised that she would need a bone marrow transplant.
At this time, Naileen talks about meeting an ‘angel’, Elba Lebron. Elba is a community engagement representative from the Icla da Silva Foundation. Elba organizes donor drives and works closely with patients throughout Puerto Rico who are in search of a life saving bone marrow donation. Elba provided the support that Naileen needed to continue moving forward. With Elba’s help, they hosted numerous marrow drives in Puerto Rico. Naileen felt better about her diagnosis. She realized that she wasn’t alone. In raising awareness during the donor drives, she gained more hope. She focused on helping others. Even if she could not find a match for herself, she may be able to help others to find a match. That feeling gave her satisfaction. Her friendship with Elba was a major turning point in Naileen’s journey.
Her Second Angel
Naileen began a pill form of chemotherapy and was slowly restoring her health. She established a friendship with a man named Jerardo, who became her second angel. As time passed, they began dating and a romance quickly blossomed. “It felt like a blessing, I didn’t think anyone would want to deal with something like this. He is always there for me, helping me, and he is a great father to my son. My mom was happy to see things turn for me. We moved to Kissimmee, Florida in August 2016. We wanted a better quality of life, and access to more advanced treatment for myself and my son Onix.”
Naileen enjoys watching movies at home with Onix and Jerardo. She loves the beach, but because of her diagnosis and the risk of infection, she can’t visit as often as she would like. She loves being a mom, taking care of Onix and watching him progress in his everyday interactions with people. Watching him play makes her happy. Naileen has managed her challenges and is happy with her accomplishments so far, especially with her son, but she wants to do so much more. She understands that the ups and downs will continue, and although there are times when she questions what will happen next, Naileen knows that God’s plan is far more than what she can imagine. She puts all of her trust in him, and the guidance of her angels.
The Next Challenge
Naileen is in desperate need of a bone marrow transplant. The doctors have been searching the national registry for a matching donor for 3 years. Finding a matching bone marrow donor is not an easy feat, especially for patients with Hispanic or Latino heritage. There is currently no match for Naileen on the Be The Match bone marrow registry. The registry is the largest and most diverse in the world, but patients of Hispanic origin only have a 46% chance of finding a potential match.
The solution to this challenge is to get more people, especially those with diverse ethnic origins, to join the bone marrow registry. You can join online in less than 10 minutes, and agree to become a potential donor for patients like Naileen.
Please join the registry, for Naileen or the 14,000 other patients who are searching for their match.
JOIN THE REGISTRY
You can also help by sharing Naileen’s story. As we increase awareness of the need for more potential donors, especially for people with diverse ethnicities, we hope that more people will understand the importance in joining the registry. The donation process is not difficult and there is no reason to be afraid. You can read more about it here: donation process
Thank you for reading Naileen’s story. We hope that her angels will help us guide more potential life-savers to join the bone marrow registry. It can start with you.
February is Black History Month
Black History Month has arrived once again. February 2018 is a perfect time for meaningful reflection on the highs and lows of the past; being reminded of lessons learned and lost opportunities. Hats off to our tenacious ancestors who set the tone for future generations, paving the way for change and healing in an often volatile environment.
We may not all be movers and shakers in this world, but each day presents us with subtle choices. Taken seriously, these small windows of opportunity may change the world for just one other person. What legacy are you building for coming generations to follow? We think changing the world for one other person at a time is the most effective method because a whole lot of little contributions make up a lifetime of stunning declarations.
We encourage each and every person to join the movement for a better future – especially African Americans and minorities. Shockingly, the African American donor pool makes up only 5-7% of the worldwide registry, which effectively results in only a 66% probability of finding a perfect bone marrow match for members of this community. This is comparable to a 97% chance of finding a match from the white donor population.
Although blood cancers are the most commonly mentioned condition for a bone marrow transplant, there are a myriad of other illnesses, too. Sickle cell disease also requires a bone marrow transplant for any chance of recovery andis more prevalent in the African American population.
The diversity of this ethnic group’s genetic and familial history, however, presents a massive challenge in building a fully representative donor pool. To put it bluntly, we need more donors. The more diverse the pool of potential donors, the greater the possibility for everyone who needs it to receive a life-saving bone marrow transplant from a perfect donor match. This is true for any population, but especially for members of minorities and mixed heritage.
The largest bone marrow registry, Be The Match, aims to facilitate an ever-widening pool of potential bone marrow donors. The greater the diversity presented, the better for all. Every person deserves a second chance at a beautiful, healthy life
In this month of remembrance and celebration, take ten minutes to register as a bone marrow donor.
It is quick, painless and potentially life-changing. You can register online, or at one of the many bone marrow drives around the country. Hopefully you will even earn the privilege of being called upon to donate as you help to build a better world.
Be proud of your heritageand stand firm as an advocate for healing and renewal.
TIFFANY DAVIS IS STRONG – TIFFSTRONG
Tiffany Davis is a 31 year old woman from Miami Florida. She is smart, beautiful and strong. She is battling cancer for the second time in her life and she refuses to let it beat her. Tiffany is a Warrior.
At the age of 28, Tiffany found a small lump under her left arm. She had a family history with breast cancer, her grandmother died from it, but it was never really talked about. She noticed the lump during a self examination and was diagnosed in 2014. It was detected in early stage 2, and was diagnosed as an aggressive form of cancer, described as triple negative. She had chemo, a bilateral mastectomy, otherwise known as a preventive mastectomy, followed by radiation treatments. Since her cancer was ER+ (estrogen receptor positive), she was also put on hormonal therapy.
Tiffany is strong and she survived her first battle, but after two years as a survivor, during a routine check-up, her labs came back with abnormal red blood cells and a low platelet count. The oncologist sent her to a hematologist for more tests.
After a series of labs and a bone marrow biopsy, it was confirmed on July 31, 2017 that Tiffany had acute myeloid leukemia. This diagnosis was the result of receiving both chemo and radiation for her breast cancer. Tiffany’s best chance of survival is to receive a matching bone marrow transplant.
Tiffany remains strong. She is positive and faithful and she will not give up. She insists that the first cancer changed her. She has become more outspoken, and believes it is important to share her journey and bring more awareness to it. She believes in her strength.
At 31 years of age, Tiffany is undergoing chemotherapy again. She has completed phase 1, induction chemo, which consists of 24 hour/day chemo treatment for 7 days. The process clears the bone marrow of leukemia cells, but dramatically affects the immune system and requires a 28 day stay in the hospital.
Phase 2 is the consolidation process, where they try to keep you in remission, through continued chemotherapy, until a matching donor can be found.
Finding a matching donor is Tiffany’s next battle.
African Americans have a high propensity to be diagnosed with cancer. About 1 in 2 black men, and 1 in 3 black women will be diagnosed with cancer in their lifetime. Many of these cancers can be cured with a bone marrow transplant. Since African Americans have a greater genetic diversity than other populations around the world, this diversity can make finding a perfect match more difficult. This is further impacted by the fact that the African American community is simply underrepresented in the national bone marrow registry.
We encourage you to join the registry and stay committed to helping save the life of a patient in need. You could be the life saving difference. Please register using the TiffStrong referral code at Be The Match.
As a warrior, Tiffany Davis refuses to give up hope. She is thankful for the support of her family and friends and she is grateful to be able to share her journey with others. She has been documenting her thoughts and findings through her Youtube channel:
You can help Tiffany and many other patients looking for a matching transplant by hosting a marrow drive of your own at your company/school/church. Every drive helps us add more donors to the registry, please click here to request more info: https://icla.org/events/host-marrow-drive/
We stand strong with Tiffany and will do everything that we can to help her survive this next battle.
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.
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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:
Volunteer Highlight: Melissa
On a cozy street in Queens, the sun is shining through the clouds. It’s a typical day in suburban New York City, as cars pass slowly down the road and neighbors walk their dogs down tight, hilly sidewalks.
At the end of the street, at the corner of 145 Place, stands a signpost. Two city workers diligently strap a second sign to the post. The sign reads “Robert C. Lohnes Way.” A young, red-headed woman watches them, smiling. Her husband stands beside her, holding her hand.
The Robert C. Lohnes Way sign has hung at 145 Place since 2015, but it was whisked away during a volatile wind storm that hit the sleepy neighborhood last March. The sign was instilled to honor the life of Robert “Bob” Lohnes after he passed away from MDS in 2014. It is an acknowledgement, not only of Bob’s battle with cancer, but of the long and adventurous life he lived.
An unmistakably tall and spritely figure, Bob’s bright eyes shone above his signature shapely moustache. Bob’s life was one of service. He left behind a legacy few could hope to achieve. As a younger man he served in the Navy during the Cuban Missile Crisis and then became a New York City Police detective. He was a fingerprint expert called upon by the FBI to support several high-profile forensic cases. He volunteered for the Whitestone Community Volunteer Ambulance Service and was a post 9/11 Rescue Recovery and Identification volunteer. For 30 years he was a Scoutmaster, affectionately called “Uncle Bob” by his Scouts. During his tenure he lead over 50 Scouts to the highest rank, known as the Eagle Scout.
It was just before a Scout trip, during a required routine physical, that he learned there was a problem with his blood count. When he returned from the trip, he underwent further tests. Finally, he learned he had Myelodysplastic Syndrome (MDS). MDS is a blood cancer which disrupts the production of blood cells.
Doctors told Bob and his family that he would need regular blood transfusions, and that to cure the cancer he would need a bone marrow transplant. Bob, characteristically, wasn’t fazed, but his daughter, Melissa, wanted to know more. She began to research the disease, their options and organizations who supported patients in Bob’s position. It was then that she learned about The Icla da Silva Foundation. A service-oriented family, Bob and his wife Magaly, along with Melissa and her husband Mike, formed a team, “Bob’s Mustaches” at the Foundation’s annual Matchmaker 5k Run/Walk, held on Roosevelt Island in New York.
Things progressed faster than expected. Bob’s brother was tested to see if he was a bone marrow match. Like 70% of all patients who need a bone marrow transplant, he wasn’t able to find a compatible match within his family. In February 2014, he began experimental treatment, but his condition only worsened and he was soon hospitalized. The doctors told him and his family that his kidneys were failing from an infection, as his immune system weakened. Just five days after being hospitalized in March 2014, he passed away.
In the face of terrible grief, those who loved Bob wanted to create a remembrance for him. One of his Eagle Scouts, Brian Connolly, petitioned the local town council to have 145 Place co-named “Robert C. Lohnes Way.” Bob had lived on the street for nearly 50 years and raised both his children there. Brian was able to collect signatures from the required 80% of the street’s residents, and at an official naming ceremony, the honorary sign was hung for the first time.
But the street isn’t just named after Bob, it is imbued with his memory. His daughter Melissa recalls, “We would wait for him to get home every day. We would see him walking down the block and we would run down the street and jump into his arms.”
For Melissa, community service is a way to remember her father’s life and honor his passion for helping others. The Lohnes family has run in every Matchmaker 5k Run/Walk since Bob’s passing, and Melissa has consistently come in 1st place as Individual Fundraiser. Bob’s Mustaches has been the Top Fundraising Team for four years in a row.
The family hosts an annual art benefit, gathering donations from the art world and their own community. The event includes a silent auction and raffle, as well as games and door prizes. Some years they host a bar event with a local establishment that donates half the proceeds from the night to the Matchmaker 5k team.
This year, in recognition of their outstanding volunteer activities (for The Icla da Silva Foundation and many other community service works alike), The Disney Company honored Melissa, Mike, and Magaly with the VoluntEAR of the Year award.
For Melissa, no award can compete with the knowledge that her father’s memory continues to bring health and happiness to others. The Robert C. Lohnes Way sign at the end of 145 Place is a symbol of their dedication to his legacy. The sign is also a symbol of the love they shared, and the many sunny afternoons Melissa spent, eager to jump into her father’s waiting arms.
Even though they are born and bred New Yorkers, please join us and the Lohnes family on September 24th in the beautiful city of Boston for the Matchmaker 5k to support patients in need of a life-saving transplant. Register Now:
Patient Story: Asaya Bullock
Asaya Bullock has past a major milestone. He celebrated his 6th birthday, despite the fact that he was diagnosed with I-PEX Syndrome at 8 months old and his parents were told that he would not live past the age of 2.
I-PEX (immune dysregulation, polyendocrinopathy, enteropathy, X-linked syndrome) is a rare genetic blood disorder that causes multiple autoimmune disorders.
This little boy has been fighting for his life for 6 years.
There is a cure, a bone marrow transplant, and it is relatively simple.
A PBSC bone marrow transplant requires a donor to take injections of filgrastimm over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The difficult part is finding a matching donor.
Most cells in your body contain HLA proteins. In order for a bone marrow transplant to be successful, the HLA proteins of a donor need to match those of a patient. A great deal of matching is determined by genetics and ethnicity. In Asaya’s case, his parents had a second child in an effort to find a match for their son. “As a mother, it is devastating to watch your child suffer and there is nothing that you can do to fix it,” say Charline Bullock, Asaya’s mother. Asaya’s parents, Charline and Vincent had a beautiful baby gir named Anaya.
Asaya received his sisters cord blood, but despite being a 7 point match out of 10, his body rejected her cells.
Asaya suffers from serious memory loss, body aches, stomach issues, and joint pain. “It basically hurts everywhere,” says his mom. Obviously, Asaya is a fighter, living twice as long as expected by his doctors.
Life is a series of ups and downs, and the same is true for the Bullock family. The birth of a beautiful baby sister, and the rejection of her cord blood. A donation from a registered donor, and another rejection from Asaya’s body. Recently, the Make a Wish Foundation sent the family to Disneyland. You can see the smiles as they met their favorite characters; definitely a well deserved “up” moment for the Bullock family.
Currently, the Bullocks have been living on the hopes of finding a match through the bethematch bone marrow registry. The Icla da Silva Foundation has organized 30 donor drives in the hopes of finding a match for Asaya. You can register to become a donor here:
As you would expect, living with a rare disease and traveling to various specialists across the country for treatment requires financial assistance. Asaya’s father has instituted his own GoFundMe campaign and even one of the Icla da Silva volunteers, Omari Jinaki, (read his story here) has contributed to raising awareness and funds for Asaya and his family here.
Asaya and his family has been searching for a match since he was eight months old. Would you please consider joining the registry in case you are a match for Asaya or someone just like him. You can also help us continue to make a difference in patients lives by making a financial contribution to the Icla da Silva Foundation.
Please help us find a bone marrow match for Asaya.
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:
- Registering to become a bone marrow donor,
- Supporting our efforts by making a financial contribution
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.