The NMDP and ASBMT submitted a coverage request for these diseases to increase access to care. Medicare does not indicate that these diseases are either covered or non-covered and this lack of clear coverage puts a patient, and the hospital treating him or her, at severe financial risk if Medicare denies the reimbursement claim after the procedure is complete.
While Medicare primarily serves people age 65 years and older, about 15% of those covered are younger adults who have a disabling illness, such as sickle cell disease. In addition, other payers and insurance plans, including state Medicaid programs, often match their coverage to Medicare.
CMS has agreed to open a National Coverage Analysis (NCA) for two of these diseases now – Sickle Cell Disease and Myelofibrosis. There is a public comment period open from now until May 30, 2015.
How you can help: Please visit the Medicare website on this topic, read the materials and follow the instructions on how to submit a comment. Comments can be simple and to the point; complexity is not required. Please note – the quality of comments is more important than sheer quantity.
Suggested content for comments:
• Identify what type of stakeholder you are: patient, caregiver, advocate, etc.
• Identify if your comment is in regards to transplant for Sickle Cell Disease or Myelofibrosis, or both.
• Share your story: Tell CMS about your experience with transplant and sickle cell disease. If you experienced a lack of insurance coverage, explain the barrier that created and how it may have impacted you personally.
Comments are due by May 30, 2015. These comments are extremely important to the process and are taken seriously by the Medicare coverage team. Your input will be crucial to the success of this initiative to make transplant accessible to more Medicare beneficiaries.
Please feel free to contact Alicia Silver with questions regarding the National Coverage Analysis: firstname.lastname@example.org. For other questions regarding our patient resources and services you can call 1 (888) 999-6743 or email us at email@example.com
Thank you for your help!
Lonely for playmates, Aksel, 3, waits in isolation for marrow donor
Most parents treasure the idea that their child is one-of-a-kind. Aksel’s mom and dad, however, desperately hope their little boy is not.
Like any 3-year-old, Aksel has energy to burn. But for this toddler, there’s no swinging from the monkey bars with other kids. No trips to the zoo. No pre-school classmates to play superheroes or dig in the sandbox with. No buddies coming over to ride trikes and toss back a juice box or two.
Aksel lives in near seclusion, 90 percent quarantined at his Miami home because of a life-threatening blood disease that has corrupted his immune system. Exposure to even minor viruses or bacterial infections could likely reactivate his disease and prove fatal.
There’s a cure. But it will take a stranger to step forward.
While a marrow transplant can cure Aksel, doctors so far can’t find a matching marrow donor. Turns out few registered marrow donors anywhere on the planet represent the genetic combination – Scandinavian and South American – that is Aksel.
No one in his family is a marrow match. There’s no match on Be The Match Registry®, the U.S. listing of volunteer marrow donors, and international searches haven’t been encouraging.
Aksel’s need for a marrow donor is critical. So his parents, Fredrik and Carla, are urgently searching the world over to find someone to save their “little Viking,” as they call him.
There’s power in your ancestry that makes your marrow life-saving and Aksel’s family is hoping you’ll use it. If you’re between 18 and 44 – especially if you have Scandinavian and/or South American heritage – please visit http://join.BeTheMatch.org/SaveAksel and join the marrow registry. You could be the cure for Aksel or patients like him.
Complete the online health form and you’ll receive a swab kit in the mail. Swab the inside of your cheeks and mail it back in the postage-paid envelope. It’s that easy.
Every year, 14,000 patients in the U.S. with leukemia, sickle cell and other blood diseases search for a marrow donor to save their lives. Patients are more likely to match someone who shares their heritage, but family isn’t enough. Most of us (70 percent) won’t have a match in the family. Patients need their communities, indeed the world, to step up.
Typically healthy, Aksel began coming down with one persistent bug after another in November 2014. Then in December, he inexplicably suffered a seizure and organ failure. A bizarre convergence of three viruses had triggered hemophagocytic lymphohistiocytosis or HLH – the blood disease that is now threatening his life.
Aksel spent hours in surgery and nearly two weeks in the pediatric intensive care unit at Miami Children’s Hospital. Doctors didn’t expect him to survive, but Fredrik and Carla’s “little Viking” fought his way back home.
Home definitely beats a hospital room, but until a marrow donor is found, home has become a necessary bubble of isolation. And, good luck explaining the “necessary” part to a 3-year-old. While upbeat and positive, Aksel is lonely – especially for other children to play with.
His typical day includes bits of normal life. But even those bits come with restrictions.
For instance, Aksel goes on walks in the neighborhood to get fresh air and see new faces. While he can say ‘hello’ to people, he must keep his distance and have no contact. His parents learned the hard way to bypass walking by the park, outdoor birthday parties or blocks where lots of children play. If Aksel sees kids playing, he cries and cries – and pleads to join them. “It’s so heartbreaking,” said Carla.
The complex where he lives has an indoor and outdoor park, but Aksel can’t play when other kids are there. He can only play by himself and only if the equipment has been thoroughly cleaned and disinfected.
There are a few children Aksel may play with one-on-one, but only under the strictest of conditions. First, the child must be screened for 72 hours before any visit to ensure he or she has no sign of illness. If cleared, the playdate must wear very clean socks and leave their shoes outside. Once in the house, he or she must visit the “sterile bar” to get disinfected and fitted with a mask. Even with all that, the playdates are short and contact is limited.
Thank goodness for Onyx, Aksel’s trusted furry friend. This Shih Tzu keeps Aksel company, watches over him without getting too close, resists the urge to lick and even tolerates getting her paws and snout disinfected daily. They are inseparable.
“We try to make his everyday life ‘sort of normal’ – as much as possible, while at the same time keeping him safe. He doesn’t understand and it feels awful as a parent. But we almost lost him. Catching a cold could bring us right back to the ICU,” said Carla.
Burst Aksel’s Bubble
Clearly Aksel is a fighter. He’s already beat seizures, organ failure and internal bleeding. But he could use some re-enforcements right about now. If you are unable to join the marrow registry, there’s another way to help – and it would instantly put a smile on Aksel’s face.
Child or adult, please help us #BurstAkselsBubble. Send him a photo or video via Facebook, Twitter, or Instagram playing like a 3-year-old and wishing him well.
Aksel would cherish playing with a world of new buddies, if only virtually, for now.
What’s fun to Aksel? He loves dancing, singing and the rain. Sing him a goofy song or show him your dance moves. He’s partial to Pharrell Williams’ “Happy,” Madagascar’s “I like to Move It, Move It” and “Gangnam Style.” Stomp in some rain puddles for him – the messier the better. His dad works with Formula One racing and Aksel loves cars. Put on a Hot Wheels® race for him.
Does your dog do tricks? Put on a show for Aksel (and Onyx, too). Build a secret fort and invite him in. Rally a convoy of trikes and parade around your block wishing Aksel well. Create a special message for him with sidewalk chalk or finger paint. He misses the swimming pool – the tub is as close as he gets now – so do some goofy dives for him.
“If the public would do this for Aksel, especially other children, it would mean so much to us,” Carla said. “You’d be helping my little boy forget that his life right now is only ‘sort of normal.’ You’d be adding more smiles to his day.”
And, by the way, Aksel has a great smile.
You can give now to help children like Austin, whose family has directly benefited from the Be The Match Patient Assistance Program. When Austin was diagnosed with a rare form of leukemia, his mother, Nikki, had to quit her job to care for him. She soon discovered that the bills don’t stop just because your child is sick. Prescription drug co-pays, the travel costs to and from the transplant center, and the long hospital stays quickly added up to thousands of dollars each month. By the time Austin was finally well enough to go home after his transplant day in May 2014, he had spent more than 500 days in the hospital.
The Camiolo’s Were Inspired to Help
In 1994, John and Caryn Camiolo watched a news story about Baseball Hall of Fame legend Rod Carew; his daughter’s cancer journey and their desperate struggle to find her a matching marrow donor. Parents themselves, the Camiolo’s empathized with Rod’s plea and knew they wanted to get involved.
Soon after, John and Caryn started hosting marrow drives to encourage people to join the registry. “We encountered numerous patient families struggling with transplant-related expenses including travel, housing, deductibles and copayments. These costs were debilitating for many families. We felt called to help.”
They established the John and Caryn Camiolo Patient Assistance Endowment Fund to help ensure that patients experiencing financial strain could afford the marrow transplant and post-transplant care they needed.
“A parent, spouse, or child falling seriously ill puts a terrible strain on even the most stable families. It means so much to us to help these families, many of whom travel across the country for even the slimmest chance of receiving help. No family should be distracted by finances when they are focused on getting well,” says John.
For John and Caryn, giving back is a natural next step. “We are happy to contribute to such a worthy cause and we encourage everyone to consider giving what they can.”
Double Your Impact
John and Caryn Camiolo want to help patients like Austin—and mothers like Nikki—pay for some of the uninsured transplant costs. They have given $100,000 for Be The Match to use as a challenge match, and are challenging our supporters to raise an additional $100,000 for Patient Assistance. Your gift will be matched, dollar-for-dollar, and if it’s received by June 30, will have twice the impact in bringing assistance—and hope—to patients and families.
Please send your gift—of any amount—to Be The Match today and double your impact!
“I knew that I could choose to sit home and feel sorry for myself, or I could get out and rediscover what I could do with the health and life that I had been given back. I chose to do that,” she says.
But getting back to traveling took some time. “It was about 2 years after my transplant before I felt like I had the stamina and strength to travel. I took short car trips first and worked up from there. My first flight was from my home on the West Coast to the East Coast. And eventually about 3 years after my transplant, I felt like I was ready to visit my donor in Germany,” Chris says.
Mike also knew he wanted to spend time away from home after his transplant. “Before my transplant, my wife and I would spend several months in Florida during the winter. It took just over a year after my transplant before I felt ready to give that a try again,” he says.
Chris and Mike say planning ahead is the key to staying healthy. And by planning ahead, you’ll also be prepared if the unexpected happens. Below are suggestions for traveling after transplant. Make sure you also follow any instructions your doctor gives you.
1. Talk to your doctor before you go. Tell you transplant doctor, oncologist or primary care doctor about any of your travel plans. It’s a good idea to talk to your doctor before you schedule your trip to make sure your doctor feels you’re healthy enough to travel. Ask if there are any precautions you should take while you’re away from home.
2. Take a letter from your doctor and a current medicine list with you. “I always travel with a letter from my doctor that explains my health history, my condition, the list of medicines I’m on and my most recent blood test results,” Chris says. “I also make sure my sons have a copy of my Power of Attorney for Health Care, and I carry my advance directive with me, just in case it’s needed.”
It’s also a good idea to carry emergency contact numbers with you, along with an after-hours phone number for your medical team. If you wear a medical alert bracelet, be sure that information is up-to-date, too.
3. Know where the nearest hospital or transplant center is, in case of an emergency. Both Mike and Chris needed to go to the hospital while they were away from home, and are thankful that they were prepared. Because Mike was going to be away from home and his transplant doctor for several months, his doctor connected him with another transplant doctor in Florida.
“He gave him all of my files and asked him to be my doctor if needed. It’s was a good thing we had done that because I had some severe respiratory issues and needed treatment,” Mike shares.
4. Make sure you have enough medicine with you. Take all medicines with you in their original containers. If you’re flying, pack your medicines in your carry-on bag. And be sure you have enough medicine with you to last you the whole time you’ll be away. If you’ll be living away from home for a bit, like Mike, make sure you have your prescriptions transferred to a nearby pharmacy and check to see that you have enough refills to get you through the amount of time you’ll be gone.
5. Let other people know about your needs. If you’re planning a visit to see friends or family, be sure to let them know about any restrictions you have. For example, give them a list of foods you can eat, those you need to avoid and how your food needs to be prepared.
If you’re going to be traveling with a tour group, contact them ahead of time. “I’ll explain that my immune system is weak and that there are certain restrictions I have, especially with food. They’re really good about making sure that everything is okay for me to eat,” Chris says.
6. Take precautions on the plane or in hotel rooms. Ask your doctor what precautions you should take if you’re flying or staying in a hotel room. The first time Chris took a long flight, she wore a mask and gloves as a precaution. “The people sitting next to me looked worried and I said, ‘It’s not me, it’s you!’ I explained that I’d had a transplant and my immune system was weak,” she shares.
When she arrives in a hotel room, Chris also wipes down all of the hard surfaces—like faucets, sinks, toilet seats, countertops and desks—with disposable sanitary wipes. And she never walks around a hotel room without socks or slippers.
7. Take it slow. Deciding when to start traveling is up to you and your doctor. If you feel ready, ask your transplant doctor what he or she thinks. If your doctor gives you the go-ahead, Chris says, “Just do it. Start with small trips and develop your confidence slowly.”
Mike adds, “If you have the energy to travel and your doctor’s okay, go for it! But don’t overdo it. Take your time, enjoy yourself, but schedule some downtime, too. It’s not a sprint, it’s a journey.”
Do you have travel tips for other transplant recipients? Share your tips for having a safe and fun trip on our Be The Match Patients Connect Facebook page.
Any time you go back to work after a long time away, it can lead to mixed emotions—especially after an illness. One of those emotions shouldn’t be worrying that your health history could be used against you. Whether you’re returning to your current job or looking for a new one, remember that there are laws in place to protect you.
When you’re returning to work
When you go back to work, you might find that you don’t have the stamina to take on a full workload right away or that you have other special needs. Under the Americans with Disabilities Act (ADA), you can ask your employer to make reasonable accommodations for you.
Before your return, you might find it helpful to:
- Contact your human resources (HR) department and talk to your supervisor, shop steward or union representative.
- Talk about any special needs and ask for any changes that would make it easier for you to keep your job (e.g., flex time, regularly scheduled breaks, working from home or special equipment).
- Work out clear expectations about your schedule and work load.
- Keep a record of each request and the response.
- Talk to your HR department about your health insurance benefits. There are laws, including HIPAA and COBRA, which protect your benefits if you had health insurance before your leave.
With her doctor’s permission, Megan went back to work 6 months after transplant. She was eager to get back to work because she felt like she was missing out. But looking back, she realizes she should have taken things a little slower.
“My advice is to take your time,” says Megan. “I learned that it is okay to work your way back into it and you’re probably putting more pressure on yourself to get back to normal than your company will expect of you. Make sure you are ready mentally and physically to endure all that needs to be done in a day’s work. Try to maintain an efficient work/life balance because after what you went through, you deserve to be happy, healthy and do what you love.”
If you get Social Security disability benefits, there are resources to help you get back to work, like a trial work period. A trial work period lets you test your ability to work and still get Social Security benefits for up to 9 months. You can learn more about a trial work period on the Social Security Administration website or call (800) 772-1213. Also, check with your long-term disability provider through your work. They may have more services for you, like help planning your return to work or financial support as you gradually work more hours.
Searching for a new job
If you decide to look for a new job after transplant, even years down the road, you don’t have to tell your potential employer about your health history unless you choose to do so. And companies can’t ask about it, either.
“You do not have to disclose anything about your medical history and by law they’re not allowed to ask you anything about your medical situation,” says Nancy Boyle, MSW, LCSW, a transplant social worker at OHSU Knight Cancer Institute. “If you’re in an interview, know that your work history and your abilities are the things that are the most important to emphasize.”
However, if you had a gap in your employment, a potential employer might ask you to explain it. CancerAndCareers.org offers tips for explaining your resume gap. The tips are useful for any transplant recipient, whether or not your transplant was for a blood cancer.
Although you’re not required to talk about your health history, some transplant recipients choose to do so.
“There’s a definite gap in my employment history, so to me it wasn’t an option to not bring it up. If they didn’t want to hire me because of that, it’s probably not a place where I would have wanted to work,” says Matt, a transplant recipient. “When I was interviewing for jobs and I brought up that I’d had cancer, I think the reaction was positive. I think that it was something that showed that I’d gone through tough times and was resilient.”
“I completely disclosed my medical history during my interview,” says Kathy, a transplant recipient. “I know that is not required, but I did. Because I had done so, my new employer understood that I had many doctor appointments and would have to adjust my schedule to meet my needs.”
Be The Match® can help you find resources to help with the transition back to work or looking for a new job after transplant. Contact our patient services coordinators at firstname.lastname@example.org or 1 (888) 999-6743.
The following resources can also help you understand your rights about going to back to work, disclosing health information and easing your transition back into the workforce:
This Mother’s Day is extra special for a military family who donated their baby’s cord blood.
Angela, who served her country in Afghanistan, and her husband Don, an Army first sergeant, donated their baby’s umbilical cord blood shortly after his birth.
Donated cord blood units that meet criteria are frozen, stored, listed on Be The Match Registry® and made available to any patient in need of a transplant. Cord blood, usually disposed of after birth, is valuable because it contains blood stem cells. These cells can be used to treat more than 70 different diseases, including leukemia and lymphoma. For some patients, a blood stem cell transplant is their only hope for a cure, and thousands of patients are searching for a match.
Donating to a public cord blood bank is free. Cord blood is collected right after birth, and has no effect on labor or delivery. The process is safe for moms and babies. “[My doctors] did it right after I had my son, so it was a quick process,” said Angela.
Angela is African American, making her child’s cord blood donation especially valuable. Transplant patients are more likely to match someone who shares their racial or ethnic heritage. But with fewer African Americans on worldwide marrow donor registries, these patients have a more difficult time finding a close match. Using blood stem cells from cord blood may be their only hope for survival.
Unlike blood stem cells found in bone marrow, stem cells in cord blood are immature and haven’t yet learned how to attack foreign substances. Cord blood does not need to match as closely for the transplant to be successful, therefore it’s easier to match transplant patients with cord blood than with other sources of blood stem cells.
This makes access to cord blood vital for ethnic minorities. Angela learned about cord blood donation as a pregnant soldier when a representative from the Bloodworks Northwest cord blood program visited a class at her Army base near Tacoma, Washington.
She had heard of cord blood donation, but when she learned how badly African American donors were needed, she was convinced it was something she needed to do after her baby was born. That’s why she arranged for her cord blood donation earlier in her pregnancy, and brought the paperwork to the hospital the day her child was born.
At the stroke of midnight, January 1,2014, Angela and her husband welcomed their healthy baby boy into the world. He was the first baby of the New Year born in Western Washington. Don Jr. joined a wonderful family with two older brothers—and parents inspired to help others, however they can.
Expectant mothers who are interested in donating cord blood are advised to contact their cord blood bank or Be The Match between their 28th and 34th weeks of pregnancy. Learn more about cord blood donation, go to BeTheMatch.org/cord.
Becky is a bone marrow transplant (BMT) nurse at one of our Network transplant centers. We work with clinicians like Becky every day to help patients before, during and after transplant. While all nurses give patients and families hope, Becky has something extra special to offer—her own experience as a transplant recipient.
When Becky was just 18 years old, she received a marrow transplant for chronic myeloid leukemia, with her sister as her donor. The transplant was a success and allowed Becky to return to college. Then, just weeks before graduating as a nursing major, Becky received heartbreaking news: her cancer had relapsed.
Over the next 18 years, Becky’s doctors used medications and donor lymphocyte infusions to manage her cancer, but she struggled to stay healthy. “I could never make it past the three-year mark. The cycle of relapse and remission became my new normal,” says Becky. “I love working with patient families, but when I couldn’t because my immune system was vulnerable, I worked as a BMT research nurse. It was rewarding to help further the science.”
In 2010, after her sixth relapse, Becky’s doctors decided it was time for a different approach. A search began for an unrelated marrow donor and three fully-matched donors were located. “Not every patient has a match. I felt lucky and grateful.”
Becky was admitted as a patient in her own transplant unit. The transplant was a success and recently, for the first time ever, Becky sailed past her three-year, post-transplant checkup with a clean bill of health.
“The BMT unit is a place that needs hope and, just by looking at me, I give that hope to both my colleagues and patients — I’m someone who has walked in their shoes and truly understands,” says Becky.
Becky is making plans for the future, and at the top of her list is a trip to hug the young man who stepped forward as her marrow donor and saved her life.
Mindy and her husband Daniel Coleman are a creative, young couple living in Huntersville, North Carolina. He works in advertising. She makes leather baby moccasins in honor of her Native American heritage, and sells them on Etsy.
In 2011, the combination of their genes produced Isaac, a fragile and pensive-eyed son who inherited a rare disorder: Fanconi’s anemia (FA)
The Colemans live a different reality from their millennial friends who still have the option of gliding through life. As Mindy put it, “This journey is one we didn’t expect.” In fact, it was the worst thing they could imagine.
And yet, says Mindy, “There is a bitter sweetness to life, a beautiful kind of joy deep down in my bones that wasn’t there before.” Before Isaac.
Fanconi’s anemia affects many systems of the body. Patients can develop leukemia, bone marrow failure, tumors and other serious conditions. The average patient lives to be 25 and there are only about 1,000 documented cases of the disease in medical literature.
About 5 months into the pregnancy, when many expectant couples are choosing names and nursery colors, Mindy and Daniel began preparing for the worst. Mindy’s ultrasound showed swelling on the baby’s brain and doctors were unsure of his condition.
When Isaac was born on October 3, 2011, he weighed a little over 3 pounds. Soon after birth, he underwent several surgeries for a brain shunt and a colostomy – the first of many. “We’ve lost count of his surgeries,” said Mindy. He is now under the care of 12 doctors.
Today, Isaac is a handsome, dark-haired 3-year-old who weighs just 14 pounds—the average weight of a 3-month-old boy. He is tiny in stature, but big on attitude. He wears a hearing aid, walks with assistance, and now has a thumb, thanks to surgery. Music, kites and his new preschool enthrall him. He sneaks food he doesn’t like to his dog, Maggie.
Isaac’s parents know what his future holds. Most FA patients experience complete bone marrow failure between the ages of 3 and 12, so Isaac’s clock is ticking.
During the past year, Isaac’s platelet quality has declined significantly—a precursor to bone marrow failure. Doctors believe he will need a transplant by the end of the year. The Colemans hope they can find a marrow donor in time through Be The Match Registry.
But finding a close match will be difficult because of Isaac’s partial Native American heritage: fewer donors represent that genetic population. Patients are most likely to match someone of their own race or ethnicity, and a genetically close match will greatly improve Isaac’s chances for a successful transplant. So far, search results haven’t been encouraging.
In spite of the heart-wrenching worry, Mindy is inspired by several children she knows who are doing well after bone marrow transplants. “Be The Match is doing all it can to get more donors—we’re incredibly hopeful,” she says.
Meanwhile, they will wait, and hope and love their little boy with the pensive brown eyes. Isaac, a name that means “he laughs.”
Join the marrow donor registry and be the cure for patients like Isaac.
Give to deliver the cure to more blood disease patients.
Victoria struggled for her life from the moment of birth. Born incredibly bruised and jaundiced, tests showed that she had an alarmingly low blood platelet count — which continued to drop daily despite transfusions.
After years of transfusions, specialist appointments and medical examinations, Victoria was diagnosed with neonatal thrombocytopenia, a disorder where the body can’t produce and sustain enough blood platelets on its own.
The only treatment option for Victoria was a marrow transplant, but there were obstacles to overcome. First, the family had to relocate from Portland, Oregon to Seattle, Washington to be close to a children’s hospital that could care for Victoria’s special needs. A matching donor was found on the Be The Match Registry® within a few months, but Victoria had to undergo extensive chemotherapy and low-dose radiation to receive the transplant.
When transplant day finally arrived, Victoria’s family held their breath waiting to see if the new cells would take hold. The transplant was their only hope for her survival — and within days the new cells began to graft.
The ordeal was grueling, and the recovery process post-transplant was rocky, but within a year Victoria was healthier than she’d ever been in her life. Today, she’s graduating fourth grade, playing soccer, dancing and doing a ton of other things she could only dream of before her transplant. “Looking at her, you would never know what she has been through,” says Victoria’s mother. “Be The Match saved my daughter. There are no words to express how much that means to me.”
Every member of the program will receive:How can you give children like Victoria as second chance at life? Join our Monthly Giving Pilot Appreciation Program, and you’ll help patients like Victoria receive the life-saving marrow transplant they need. As a member of the program, you’ll receive tons of benefits! We want the program to be a resource for patients AND for you.
- Access to our 24/7 online Gift Service Portal to track and manage your gift
- Special monthly stories of the lives you help to save
- Walk+Run Early-bird & Discounted Registration
You’ll also qualify for additional benefits depending on the level of your commitment, starting with a minimum gift of $10.
$10-24.99 per month:
- 10% off coupon to Shop Be The Match
$25-49.99 per month:
- 15% off coupon to Shop Be The Match
- Be The Match Plush Teddy Bear
$50-99.99 per month:
- 20% off coupon to Shop Be The Match
- Be The Match Plush Teddy Bear
- Special invitation to local events across the country
$100+ per month:
- 25% off coupon to Shop Be The Match
- Be The Match Plush Teddy Bear
- Additional gift of your choice:
- T-shirt, Mug, Tote, Tumbler or Notecard
- Recognition in our Annual Report*
- *You may request anonymity if you’d prefer
- Special invitation to local events across the country
- Special invitation to and table recognition at our annual Gala Event
Join the program today!
Eric was a busy nursing student at James Madison University (JMU) when he and his Sigma Phi Epsilon fraternity brothers started a Be The Match On Campus® chapter in an effort to help Eric’s best friend, Ryan, who was recently diagnosed with leukemia.
“Ryan said to me, ‘I have leukemia,’” Eric said. With just those three word’s Eric’s life was forever changed. “I was silent at first, and then I said, ‘What can I do to help?’”
When he connected with Be The Match at a local donor drive, Eric said he quickly realized that partnering with Be The Match was the best way he could help his friend.
“Joining Be The Match On Campus, (a growing movement of student-led chapters focused on increasing awareness and fundraising for Be The Match and recruiting volunteer registry members), helped me learn more about bone marrow transplants so I could grow my chapter and educate others about blood cancers,” Eric said. “I felt so lucky and blessed with the timing of this, to do this while I was in college, where the best donors are.” Young volunteer donors are selected by transplant physicians to donate more than 90 percent of the time.
As part of their efforts, Eric and his fraternity brothers started a fundraiser called Flight Against Leukemia where they raised money by taking attendees up on short airplane rides, selling aerial photographs and hosting a drawing for skydiving.
In addition to fundraising, Eric volunteered at Be The Match Walk+Run events and local donor drives and said these experiences add to his passion for our mission.
Where are Eric and Ryan now?
Today, three years after Ryan’s diagnosis, Eric is a registered nurse at the Johns Hopkins Hospital bone marrow transplant unit and regularly works at area recruitment events for Be The Match.
After seven rounds of chemo and a successful marrow transplant, Ryan is continuing on with his life cancer-free. “I’m doing great now,” he said. “I’m finishing up school and working, and I feel like I’m getting my life together.”
Ryan has been in contact with his marrow donor, a 29-year-old German man named Tobias. “We talk every week and I plan on going out to Germany next summer to meet him,” said Ryan.
Be The Match CEO Recognizes Eric
With years of dedicated service to Be The Match, Eric was awarded a Points of Life Presidential Award for Volunteerism.
As part of this honor, Be The Match Chief Executive Officer, Dr. Chell, presented the award to Eric at the Legislative Day dinner March 2 in Washington, D.C. According to Dr. Chell, introducing Eric to the patients, families and Be The Match staff who attended Legislative Day, showcased the vital support volunteering adds to our organization.
“Eric’s passion for our life-saving mission is amazing,” he said. “His long-term commitment to the cause honors his friend Ryan and inspires us all to deliver on the promise of blood and marrow transplantation.”
According to Be The Match Community Engagement Representative Dan Gariepy, “Eric is responsible for thousands of dollars raised to help our mission and is the driving force behind countless volunteer hours at James Madison University.”
“Just doing the right thing”
Eric said he is excited and humbled by the national recognition. And he is proud to honor his best friend, who was in need of a bone marrow transplant.
Along with helping our organization in the public, Eric was a featured speaker at the Be The Match On Campus annual Summit conference in Minneapolis. His passion for the program has stayed in the family with his younger sister, Corinne, now serving as the president of the JMU Be The Match On Campus chapter.
As he continues his volunteer efforts, Eric said this recognition will be a lifelong reminder of a great opportunity.
“It doesn’t feel like I am going out of my way – I am just doing the right thing,” he said. “I am truly grateful for the opportunity to join the fight against blood cancers.”