Hearst Foundations award $200,000 grant to support the Amy Program

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Hearst Foundations award $200,000 grant to support the Amy Program

Be The Match® is thrilled to be the recipient of a $200,000 grant from the Hearst Foundations, awarded to Be The Match Foundation® to support the Amy Strelzer Manasevit Research Program (Amy Program). This increased investment from Hearst Foundations comes at a critical time as Be The Match Foundation expands support for Amy Scholars from 3 years of funding to 5 years. The Hearst Foundations’ commitment to the development of early-career investigators studying post-transplant complications furthers the r

Amy Strelzer Manasevit, blood stem cell recipient

esearch that leads to critical discoveries, helping more patients live longer, healthier lives.

“We are proud to be associated with the Amy Program,” said Hearst Foundations Executive Director, Paul “Dino” Dinovitz. “The Hearst Foundations share Be The Match’s commitment to eliminating health care disparities and ensuring access to high-quality care for low-income populations. Supporting the development of young medical investigators will help create a broad and enduring impact on the nation’s health.”

The Amy Program is the only U.S. clinical research program dedicated exclusively to discovering treatment and prevention strategies for post-transplant complications while developing the next generation of transplant physician-scientists. Amy Program researchers dedicate their careers to:

  • Finding solutions that make it possible for thousands of patients to avoid dangerous post-transplant complications
  • Improving treatments to help patients overcome complications like relapse, infection, and graft-versus-host disease

The Hearst Foundations’ grant will help these investigators establish their labs, build their portfolios, and publish the results that position them for tenure-track positions and future funding. This investment in research is key to raising the rate of “event-free” survival for our core patients by 25% over the next five years.

To learn more about how you can provide critical funding to help improve outcomes for patients in need of a life-saving blood stem cell transplant please contact Amy Conner at aconner@nmdp.org or (763) 406-8748 | Toll Free: (800) 507-5427 Ext 8748.

About the Hearst Foundations

The charitable goals of the Hearst Foundations reflect the philanthropic interests of William Randolph Hearst, with a focus on ensuring that people of all backgrounds have the opportunity to build healthy, productive, and inspiring lives. The William Randolph Hearst Foundation and The Hearst Foundation, Inc. are independentprivate philanthropies operating separately from the Hearst Corporation.

Living with chronic GVHD of the eyes

Posted January 4th, 2019 by Be The Match and filed in News
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Nearly 10 months after his transplant, Chris was back working in the office when he caught a cold from a co-worker. “My donor immune system did what it was supposed to do,” says Chris. “It rose up and fought off the illness, but then it didn’t calm down.”

Thinking his dry, red eyes were just symptoms of a cold, Chris didn’t think of chronic GVHD. Fortunately, his doctor did. During a regular appointment 2 weeks later, his doctor noticed the symptoms and diagnosed it as chronic GVHD.

“So I started on a stronger dose of prednisone. It had a pretty wicked effect on my body. But it did the trick,” Chris says. He only needed treatment for a few weeks, but many people need treatment for months or even years.

Keep an eye out for symptoms

Chronic GVHD of the eyes happens when the donor’s cells attack the surface of your eyes and your tear glands. According to Dr. Sandeep Jain, Professor of Ophthalmology at the University of Illinois, GVHD of the eyes is common for patients who’ve had an allogeneic blood or marrow transplant (BMT). The greatest risk is between 7 months and 2 years after transplant.

Signs to look for include:

  • Red and/or swollen eyes
  • Discharge
  • Eyes feeling itchy, gritty, painful, or sticky
  • Sensitivity to light
  • Blurry vision

Dr. Jain says, “The best way to lower your risk of developing severe GVHD is to catch it early and to start treatment right away.”

Early diagnosis is key

Dr. Jain recommends routine eye exams before transplant and every 3 months after. If you have any symptoms, get an eye exam right away. Don’t wait for your next appointment. “Eye GVHD can get worse quickly, so early diagnosis and treatment is the most effective and important strategy,” explains Dr. Jain.

If you haven’t had GVHD of the eyes, remember to be alert to any new eye symptoms. Chris’ advice is to, “Identify the symptoms and the root cause early. I initially thought my symptoms were from the cold I had. I didn’t realize it was GVHD until I went to the doctor.”

Treating chronic GVHD of the eyes

For many people, medicated eye drops treat the GVHD. If the GVHD is severe or doesn’t get better, an ophthalmologist (eye specialist) can recommend other treatments. Dr. Jain notes that serum tear eye drops (made from your own blood) can help if the GVHD severely damages the eye surface, and special contact lenses (soft or scleral) can help with severe eye pain.

Overall, chronic GVHD of the eyes is treatable, but it can take time to fully resolve. “With proper treatment,” according to Dr. Jain, “most patients do well, but many need ongoing treatment with some eye drops for years.”

Fortunately, Dr. Jain and other researchers are studying new treatments for GVHD of the eyes. “My laboratory has discovered how neutrophils (a type of blood cell) affect the eye surface,” which has led to clinical trials in the United States. Find a clinical trial for GVHD at jcctp.org.

Coping with symptoms

Even with treatment, GVHD symptoms can still be challenging to manage. Chris used a saline solution to flush out his eyes and clear away mucus. It also changed his appearance. “I’m so used to wearing contacts. It was a change in my image to wear glasses. It was the hardest thing to adjust to,” he said.

One day, before his GVHD was diagnosed, Chris was on the local news doing an interview. “I was sitting right next to the interviewer, but I never looked him directly in the eye. I was ashamed to have him see me like that. My eyes were so red.”

Fortunately, his symptoms cleared after a few weeks of treatment. But many people need treatment for months or years. It can be hard to cope with the symptoms and effects of chronic GVHD for this long. Talking with someone who understands may help. The Be The Match Patient Support Center Peer Connect program can connect you with someone who’s had GVHD of the eyes or a licensed social worker for support.

Questions to ask your doctor

Ask your doctor about your GVHD treatment options. According to Dr. Jain, it’s “best to seek treatment at a center that has experience with GVHD of the eye because some ophthalmologists may think of eye GVHD as just another dry eye.” If this happens, you may not get an effective treatment and your symptoms may get worse.

Here are some questions you may consider asking your doctor:

  • Could my symptoms be early signs of chronic GVHD of the eyes?
  • How much experience do you have treating chronic GVHD of the eyes?
  • Can you refer me to an ophthalmologist who specializes in GVHD?
  • What are all of my treatment options?
  • Are there clinical trials that could help me?
  • How long will I need treatment?
  • What else can I do to ease my symptoms?

Support and resources for you

The Be The Match Patient Support Center offers free support and resources to help you learn about and cope with chronic GVHD.

Chemo brain: Learning how to cope

Posted January 4th, 2019 by Be The Match and filed in News
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Are you having a hard time staying focused or remembering things? Do simple tasks take much longer than they used to? You may be experiencing a side effect of chemotherapy, often referred to as “chemo brain”. Chemo brain can be manageable, but coping with its emotional effects is not always easy.

The following are excerpts from an interview with Hailey Hassel, M.S.W., L.G.S.W., BMT Social Worker in our Patient Support Center.

What advice do you have for someone struggling with the emotional effects of chemo brain?

Hailey: Chemo brain can make it more difficult for you to do everyday tasks. This can lead to emotions like anxiety, grief and frustration. You may find yourself feeling angrier or more easily tearful than you used to. Be patient with yourself and accept where you are in your recovery. It’s not likely to be your reality forever, but it is for today.

Find strategies that will make things easier. Some people use humor to cope with frustration. Our survivorship chats and support groups are a good way to connect with other transplant recipients and learn new coping strategies. It may help to tell your loved ones what you’re going through so they can better support you. It’s also important to tell your doctors so they can rule out specific causes (like a medicine you are taking) and give you tips for how to cope.

For someone experiencing chemo brain, what advice do you have about going back to school or work?

Hailey: When returning to school or work after transplant, it can be hard to keep up with required tasks and demands. Consider these tips:

  • Start out slowly.
  • Create a To-Do list.
  • Use sticky notes to remind yourself of important items.
  • Reference your calendar throughout the day.
  • Ask your teacher or employer about accommodations that could help you succeed (such as recording meetings, or organizing your work area for better concentration).

You may not be able to fill the same role after transplant and may need to redefine your purpose, or even search for a new one. It can be hard to accept this reality. It may even feel like you’ve lost a part of your identity. It’s OK to acknowledge and grieve these losses. Talk about what you’re feeling with your caregiver, a close friend or family member.

How do you recommend someone talk about their chemo brain with co-workers, classmates, teachers or managers?

Hailey: You may choose to say something like, “Since going through treatment, my brain works a little differently. I’m going to take some notes during our conversation so I don’t forget anything.” If you’re worried about disclosing your story to others at school or work, it’s important to know you’re not obligated to explain yourself. Some people find it helpful to have quick responses ready so they’re better prepared if something comes up. For example, you could say, “the thought escaped me” or “it’s been a long day.” Ultimately, you get to choose what you want to share.

For parents of children going back to school, it’s important to tell your child’s teacher what to expect and the best way to handle any situations that may arise. You don’t need to tell the full story – just what’s important for the teacher to know so that your child can succeed. For example, you could say:

“__________ is on a new medicine that affects his/her thinking. He/she may be a little more ‘spacey’ or forget things sometimes. He/she typically feels __________ when this happens. I’ve found it helpful to _________.”

How can caregivers support loved ones struggling with chemo brain?

Hailey: Be patient with your loved one! The effects of chemo brain can make it difficult to do certain tasks. Your loved one may feel embarrassed or frustrated. Support them as they do things on their own, even if it takes longer than it used to. It’s OK for them to make mistakes. Note which coping and management strategies work best for them (for example, breaking tasks into smaller pieces and using sticky notes for reminders) and encourage them to use these during daily activities.

What else do you want someone to know if they’re struggling with chemo brain?

Hailey: You can be thankful for your transplant and still be angry about the side effects. That’s OK. Tell yourself, “I don’t have to like this reality, but it’s where I am today. I’m going to try to make this work.” Find strategies that work best for you, and incorporate them into your day. Pay attention to your body; it will tell you when you feel the most productive. It’s OK to take breaks when you feel tired. Lastly, be patient with yourself – you’ve overcome so much!

What tips have worked for you? Share in the comments!

The Be The Match Patient Support Center offers:

If you’d like more information about your rights at school or work, visit:

Transplant recipient, teacher and now ambassador advocate

Posted December 10th, 2018 by Be The Match and filed in News
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When Elle Crofton was 25-years-old, she got news that she never expected to hear.

Her doctors diagnosed her with myelodysplastic syndrome (MDS), a blood cancer that causes bone marrow failure and can progress to acute myeloid leukemia.

For her age and gender, the illness was shocking, and rare.

“I was diagnosed with a blood cancer that is mostly diagnosed in men over the age of 65,” she said. “It’s not something that you think about every day, a 25-year-old female getting a blood cancer, but it happened to me.”

Initially, Elle was able to treat her MDS with medication. When that stopped working, her medical team told her that she would need a bone marrow transplant.

Fortunately, a matching donor was found and on May 14, 2015, Elle had her life-saving bone marrow transplant at MD Anderson Cancer Center in Houston, one week before her 26th birthday.

“When I found out I had a match, I was really excited,” she said. “It was overwhelming because I don’t think you really understand all that happens and goes into it. Realizing that it was going to happen was an amazing feeling.”

Today, over three years post-transplant, Elle is back to her passion – being an elementary school teacher.

“I am back in society, back teaching doing something I love, and to be able to do that for others is what lawmakers should look at,” she said. “To have more lives saved is just so crucial – it’s such an easy thing for people to do, to donate bone marrow that I don’t know why you wouldn’t support it.”

As she continues post-transplant life, Elle said she is eager to give back and help patients-in-need, like she once was.

“Being an advocate for Be The Match means that I’m supporting a program that helped save my life,” she said. “They gave me life and I’m hoping that I can just help others.”

Advocacy Spotlight – Bob Panza

Posted November 19th, 2018 by Be The Match and filed in News
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Bob, a Be The Match Advocate

Tell us about yourself: I have been married to my lovely wife, Ann for almost 39 years. We are the very proud parents of two kids – Melissa and Nick. Both are married and we have been blessed with four beautiful grandchildren. I served as a municipal police department captain in Southern California for 30 years. I retired almost 11 years ago and am thoroughly enjoying life!

How did you connect with us? About 14 years ago, a fellow police officer’s teenage daughter, Brandii, was diagnosed with cancer. She and my daughter were close in age. Melissa and I worked with my department to organize a donor drive where we had close to 300 people join the Registry.

Unfortunately, Brandii never found a match and she passed away in 2005. At the time, I was attending a training course at the FBI Academy. Brandii inspired me to organize a donor drive in her honor and we had about 250 more people join the registry.

Tell us about being a volunteer courier: In 2006, the NMDP formed a volunteer courier program. Both Melissa and I attended the training. I have completed about 300 domestic courier trips and just returned from my 60th international trip. That is in excess of 1.5 million domestic and international miles in the air. My longest trip was from Western Australia to the East Coast of the United States, which was well over 2,300 miles in the air.

Modern long-haul airplanes carry over 300 passengers. When on those planes, I often think about the patients on the receiving end of one of those 300+ courier trips I’ve been privileged to complete. I visualize them sitting on the plane with me – men, women, children and infants. I am awestruck and humbled to think about them and their families. I am extremely grateful to be entrusted to play a small role in those people’s lives. Containing my enthusiasm and passion for what I do, is the only hard part.

Tell us about being an advocate: Initially, I was a bit nervous simply because I wanted to be the best representative of the NMDP/Be The Match as I possibly could, so I put a lot of pressure on myself at first. But then I took a deep breath and let it sink in that I was advocating for a great cause which I believed in very deeply. Once I let that sink in and envelope me, I merely rehearsed what we had been taught back in September and my apprehension turned into sheer exhilaration, excitement and anticipation.

What has your work with Lawmakers been like? So far, there is one lawmaker who has committed to co-sponsoring HR4215. I am continuing to reach out to the other three lawmakers and their staff members to keep HR4215 on their radar. I believe my face to face meetings were critical in helping open the door to communication and personal connection, along with continued email contact since those meetings.

What advice do you have for those wanting to be advocates? The best advice I can offer when advocating for the NMDP/Be The Match, is simple and is also the same best advice in how to live one’s life; BE YOURSELF. We are each endowed with our own unique personalities, painful experiences, fears and emotions. We all deeply believe in the mission we are jointly trying to achieve, so use your personal experiences regardless of their outcomes, to help get our message out to those empowered to act on them. In that way, those experiences and all those individuals we know and love who shared those experiences with us, can join in helping get that message out. In my situation, I am able to keep Brandii’s legacy alive and take comfort in knowing that her life has touched countless people whom she’ll never know.

Transplant recipient advocates for access to fertility preservation

Posted November 14th, 2018 by Be The Match and filed in News
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In May 2010, Katherine Frega was a high school junior who had spent the past year dealing with a serious illness with no explanation for her symptoms.

When her doctors were finally able to give Katherine and her family a diagnosis, it was not good news. She had Stage 2B Hodgkin’s Lymphoma.

While Katherine said her immediate thoughts were around chemotherapy and what she would need to survive, her father asked one question that has forever impacted her future in a way that the then 17-year-old had not considered.

“The initial diagnosis meeting was such a whirlwind,” she said. “Suddenly, my dad looked at my doctor and asked, ‘How is this going to affect her ability to have children?”’

Although Katherine said fertility preservation was “not on her radar” originally, she understood the stark reality of why she needed to consider it once her first round of chemotherapy was complete and her doctors recommended a blood stem cell transplant.

“We sat down with my BMT doctors,” said Katherine. “And they said, ‘The drugs we have given you already will cause you to go into ovarian failure – if you have not yet. It is just a matter of when.’ That is when we said ok – let’s do this if we have a chance.”

When her doctors told Katherine that fertility preservation was not covered under her mother’s health insurance, the medical team then put her in-touch with the Livestrong Foundation – which paid for some of Katherine’s egg retrieval cost.

“It was still a really big financial barrier for my family,” she said. “I didn’t even know if I was going to make it through the bone marrow transplant.”

With her sister as her donor, Katherine had her first transplant in January 2012. It did not engraft and three months later she had a second transplant. After overcoming graft versus host disease and recovery from her transplant, Katherine is now focused on her future and in her third-year of medical school.

“I was determined to go to college,” she said. “I got out of the hospital and started school two days later at Syracuse University.”

Having her medical team near college made it possible for Katherine’s quick transition into student life and since then, she has never looked back. Now in her third year of medical school, Katherine said she is embracing all that life has to offer.

“I scrubbed in yesterday and delivered two babies,” she said. “To think that this is an option for me, in my career and potentially in being a mother, is really special.”

While Katherine was able to get some financial assistance with her egg retrieval, she does have to pay to an annual fee for cryopreservation. Despite the fee, Katherine said that she is forever grateful her father – who sadly passed away unexpectedly in 2014 – had the realization to ensure her future as a mother.

“I am so happy that when my 19-year-old self could not think about it, my father had the foresight to make this an option for me,” she said. “It gives me a sense of relief when I do want to start a family, and know that he really wanted that for me is a big deal.”

Coping with anxiety after transplant

Posted November 8th, 2018 by Be The Match and filed in Patient Stories
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Have you worried about the future? Felt anxious waiting for biopsy results? Or had persistent thoughts about graft-versus-host disease (GVHD)? You’re not alone. Sometimes anxiety is helpful. For example, a little bit of worry about infection after transplant can be a reminder to wash your hands. But too much worry about infection can slow your recovery if it limits your normal daily activities.

Symptoms of anxiety can include:

  • Difficulty falling or staying asleep
  • Dizziness
  • Feeling so restless you can’t sit
  • Irritability
  • Muscle tension
  • Nervousness
  • Trouble concentrating
  • Upset stomach

 

Explore different ways to manage anxiety to find what works best for you

There are several ways to help manage anxiety. Sometimes anti-anxiety medicines can help. There are many other types of interventions, coping mechanisms and resources that can help you as well. For example, you could:

  • Go for a walk.
  • Meditate.
  • Do short breathing or relaxation exercises. Find some on YouTube.
  • Listen to soothing music.
  • Talk to someone you trust, or even a pet, about how you feel.
  • Get support through free Be The Match Counseling Services.

If you’re not sure how to start talking about anxiety, use these conversation starters:

  • “I haven’t been feeling like myself lately. I’m concerned my anxiety is getting out of control.”
  • “What do you recommend so I don’t feel worried all of the time?”

If you’re concerned that a loved one is struggling with anxiety, you could say, “You don’t seem like yourself. How are you feeling?”

 

One woman’s experience with anxiety after transplant

Jodi, transplant recipient

Jodi had a transplant in 2017 for myelofibrosis. She described coping with uncertainty as one of the hardest parts of recovery. “There’s constant worry and recurring thoughts of what my future will look like and whether the GVHD will ever disappear. It’s like a snowball effect,” said Jodi.

Sometimes certain events triggered higher anxiety levels. For example, she was more worried anytime she needed a bone marrow biopsy. “I was anxious for the whole week,” she said. Other times, her GVHD medicine, prednisone, heightened her anxiety.

Jodi did several things to help ease her mind, including talking with a supportive group of loved ones and practicing yoga. Having a mantra, or phrase to repeat, helped her through some of the toughest parts of recovery. “Whenever my mind starts to wander, the mantra keeps me from drifting into negative thoughts,” she said.

 

Jodi’s mantra

“I am healing.

My cells are soaring like eagles to normal.

I am getting stronger every day.

I am healing.”

 

Jodi’s advice is to talk to someone. “Communication is key. If you sit in your worries and let them grow, it’s not going to get better. Be proactive. Talk to a counselor,” she said.

For free, confidential support, contact Be The Match Counseling Services:

Ideas for expressing gratitude to your caregiver

Posted November 8th, 2018 by Be The Match and filed in Patient Stories
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The season of thankfulness may be inspiring you to express your gratitude for your caregiver. Expressing gratitude helps your caregiver feel appreciated, but it also has health benefits for you, too.

Studies show giving thanks may help you cope with life after a blood or marrow transplant (BMT). That’s because it’s closely tied to your mental health, which means you’re more likely to:

  • Cope better with everyday stress
  • Show more resiliency
  • Have a quicker recovery from an illness

Expressing gratitude can help you build stronger relationships and friendships.

 

Simple, creative ways to give thanks

When it comes to your caregiver, it may feel like saying “thank you” will never be enough. “Often, people think a thank you has to be this grand thing, when in reality it just has to be simple and from the heart,” explained Heather James, who manages communication between recipients and donors after BMT for Be The Match.

Get creative! Writing a thank you note can be very impactful, but it’s not the only way to say “thanks.” Do whatever works best for you and your caregiver. If you’d like to be more creative, “a good place to start is to think about something you both enjoy,” said Hailey Hassel, M.S.W., BMT Social Worker in our Patient Support Center.

Here are some ideas to spark your creativity:

  1. Cook a nice meal
  2. Create a playlist or piece of artwork
  3. Give a gift card to a coffee shop or favorite book store
  4. Contribute to their favorite charity in their honor
  5. Set aside time to do something you both enjoy

“Gratitude can be very helpful as you and your caregiver cope with and navigate life after transplant,” Hailey said. So consider new routines for you and your caregiver to express your thankfulness for each other even after November.

For free information and support to help you thank your caregiver:

 

Studies cited:

  1. Emmons, R. A., & Stern, R. (2013). Gratitude as a Psychotherapeutic Intervention. Journal of Clinical Psychology,69(8), 846-855. doi:10.1002/jclp.22020
  2. Lambert, N. M., Clark, M. S., Durtschi, J., Fincham, F. D., & Graham, S. M. (2010). Benefits of Expressing Gratitude. Psychological Science,21(4), 574-580. doi:10.1177/0956797610364003

Governor Dayton proclaims Sept. 21 Jason Carter Clinical Trials Program Day

Posted September 24th, 2018 by Be The Match and filed in News, Patient Stories
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To celebrate the legacy of Jason Carter, and his drive to make a difference, Governor Mark Dayton has proclaimed Sept. 21, 2018 as Jason Carter Clinical Trials Program Day.

After living with leukemia for more than four years, and participating in two clinical trials, Jason Carter passed away in May 2016 at the age of 28. Jason loved fishing, skiing the mountains of Montana, perfecting recipes and taking photos of his outdoor adventures.

To continue Jason’s legacy by helping to get more people to participate in clinical trials, the Carter family created the Jason Carter Clinical Trials Program with a generous donation to the Be The Match Foundation®, the fundraising organization that supports Be The Match®.

The program has many free and confidential services for patients and their families, including: One-on-one nurse support with assistance in finding clinical trials; an easy-to-use online clinical trial search tool; and easy-to-understand clinical trial descriptions.

Please join us in celebrating Jason Carter’s life-saving legacy.

My Bone Marrow Donation Journey

Posted September 17th, 2018 by Be The Match and filed in News
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Throughout my entire life, I’ve been able to enjoy the simple things in life. I love traveling, going to family cook outs, spending my days at the beach and singing along to Beyoncé. I always appreciated my family and the values they instilled in me from a young age. One of those values was a commitment to help other people. In 2013, while I was working for a news station, I was fortunate enough to do a story on Be The Match® and it inspired me to join the Be The Math Registry®.  I thought, ‘how much more could I show that I cared for someone, than by donating a part of me in the hopes it would help them live a longer, healthier life?’

Aja-Reigh with her recipient, Justin

A year later, I was called to be a donor for a kid with sickle cell disease. I didn’t know it at the time, but the recipient was 13 year old Justin Nunez. He was 6 months old when he experienced his first sickle cell pain crisis. He had to get used to the fatigue, headaches, dizziness and severe pain of sickle cell disease while trying to be a normal kid. As he grew older, the disease worsened and his only hope for a cure was a blood stem cell transplant (bone marrow transplant). With no matches in his family, the Nunez family turned to Be The Match to begin the search for an unrelated donor, and they found me.

With his ancestry being Guatemalan and Jamaican, Justin had to beat the odds in order to find a match. With only 19% (19 out of 100 people) on the registry identifying as racially and ethnically diverse, I’m so grateful I was able to be his match to cure his disease

Imagine my excitement when I was first called to be Justin’s donor! I immediately called my family, overjoyed at the life-saving opportunity that was presented to me. They shared in my excitement, but worried that my donation was going to hurt. I was committed to donating to this kid in need, and reminded myself that any pain I felt would only be temporary compared to what he was feeling living with sickle cell disease.

In the weeks leading to my donation, I attended appointments and information sessions to learn all about the donation process and why it is so necessary to get more ethnically diverse people on the registry. I was excited and confident in my decision. Anytime they asked if I was okay, and ready to process, my answer was always, ‘Yes, let’s do this. I’m ready!’

I donated my blood stem cells to Justin in July 2014. He’s back in school, enjoying his teenage years and his life no longer revolves around sickle cell disease.

I am incredibly grateful for the opportunity to save someone’s life. Sickle cell disease affects 1 out of every 365 African-Americans, and we only have a 23% chance of finding a match on the registry so it’s important for more people to join the registry to provide these life-saving cures. Looking back, my advice for potential donors is: Don’t let other people discourage you. Think about the recipient. If you have something that could potentially save a life, why not donate it?