Category Archives: Catastrophic Illness

Hello, Puffin! This Assistive Tech Innovation Could Change Lives

Born with cerebral palsy, Adriana Mallozzi experienced the life-changing possibilities of technology early in her life. Her experiences led her to conceptualize a game-changing new concept for assistive technology for people living with catastrophic illnesses or injuries: Puffin was born. This is the story of a new take on puff-and-sip technology that could drastically improve everyday access for people living with physical disabilities.

Adriana, center, came up with the concept for a new kind of puff-and-sip device


What makes the Puffin unique?


A puff-and-sip device allows someone living with paralysis to operate a power chair with their mouth just by sucking in air and expelling it again. The Puffin takes it a step further by allowing you to operate not just your chair but also your phone and other connected devices seamlessly through one device.

The Puffin enables individuals with disabilities to directly access their mobile devices and operate them. You can, for example, turn the lights off, access your Roku box right from your chair, shop, or make travel arrangements. You can call 911 or an emergency contact in the event of a medical crisis. We plan on expanding this connection further so the Puffin can integrate with additional emergency access devices like Life Alert.

The majority of today’s assistive technology does not understand the real needs of its users. Universal design is not evolving at the same rate as technological advancements. There are so many assistive devices that a user must adjust to, instead of the other way around. The Puffin uses machine learning to make the device operate more efficiently over time by adapting to your preferences and habits.

We know that accessibility can be defined in many different ways. Our goal is complete accessibility; that includes a new puff-and-sip design that’s both portable and affordable. The Puffin is unique because our device is user-centric, learning from your input and requiring just one device to access multiple other pieces of technology. As technology advances, so will our device.


Walk us through Puffin’s origin story.


Having a disability pushed me to be innovative in my approach to everything. My love for technology started when I was seven and my occupational therapist introduced me to assistive technology that allowed me to use a computer by myself. It was my first taste of independence and I was hooked!

The idea for the Puffin had been floating around in my head for a while. I love to travel, but typically I don’t bring my power chair for various reasons, and as a result, I feel cut off from everything. Like everyone else these days, I am dependent on personal electronics and the need to always stay connected. I knew that I needed to develop technology that was portable, that could shift and travel with me.

I got the opportunity to submit my idea to the MIT Assistive Technology Hackathon in 2015. I was one of 13 people chosen to participate, and I won first place. Four talented MIT engineering students took my vision and built a prototype. From there, I formed a team with Shana Penna, my co-founder and COO. We received funding from the Department of Veterans Affairs and the Mass Life Sciences Internship Competition. Puffin became a MassChallenge Boston 2017 finalist. It is incredible to finally see my vision come to fruition.

Adriana’s Puffin-enabled selfie


Can access to technology improve your quality of life?


Access to technology can improve someone’s life in a multitude of ways. The more support a person has, the better their health will be. Technology can make a tremendous impact when it comes to providing support to someone living with a disability. Here are some examples:

  • Technology can allow someone to get an education so they can potentially get a better job and improve their economic situation.
  • Technology can connect someone to an online banking platform and other financial tools so they can better manage and even increase their net worth.
  • If a newly-injured person has access to their community through social media platforms, they can experience a greater level of support, which can help them to psychologically cope with the injury.

One of the big impacts of technology is greater independence. There is a quantifiable impact on a person’s life if they feel dependent and immobile. It affects every part of who they are.


Can cost be a barrier to technology access and mobility?


Assistive technology is a great example of health-related expenses gone awry. When things have the assistive technology label on them, the cost of the product rises exponentially. Costs can prohibit someone with a disability from attaining essential technologies. This is why affordability is a factor in our initiative.

Keeping costs reasonable is critical for Puffin

To be accessible, this technology needs to be affordable for all users. That philosophy influences our development process and forces us to think outside the box. We have learned that thinking about technology from a user-cost perspective actually adds value to our product, because that creativity can lead to novel ideas.


How does hope tie into your vision for Puffin?


For us, especially for me personally, hope is directly reflected in this project. We hope that everyone can access the same level of technology that I have been able to access myself. We hope to enhance the lives of people with disabilities by providing a higher level of access than any of us have experienced before. To us, hope is assistive technology that is accessible for all.

“Hope is assistive technology that is accessible for all.”


How can readers support Puffin?


A new crowdfunding campaign will help to cover our costs for patent filing, branding, and keeping the project moving forward. You can make a pledge to the campaign online right now, or help us spread the word by following Puffin and sharing our content on Facebook, Twitter, and Instagram @puffinsip.

Adriana, Shana, and Marian are moving their project forward through crowdfunding


You can learn more about Puffin at puffinsip.com or by visiting the Easter Seals booth #549 at the Abilities Expo in Boston September 8-10, 2017. In addition to Adriana, the contributors to this interview were Puffin’s Shana Penna, “wannabe innovator”, co-founder, and COO; and Marian Herman-Echkah, mechanical engineer.

Ask a Professional: Covering Mobility Costs in a Broken System

Time and time again, Help Hope Live clients tell us how difficult it can be to secure life-changing mobility equipment after a catastrophic injury. To get a professional perspective, we spoke to Jeffrey M. Brandt, the founder and CEO of Ability Prosthetics & Orthotics, Inc., and Julie McCulley, a resident prosthetist orthotist. Ability P&O provides artificial limbs and braces to help patients “move freely and actively.”

From left: Marlies Cabell, Jeffrey Brandt, Robin Burton, Taffy Bowman, and Julie McCulley


How can mobility impact your life after an injury or debilitating illness?


Mobility can be key to feeling independent again after injury or illness

Julie: Many times, individuals who have undergone an injury or amputation fear they may be unable to perform the basic movements that will allow them to move independently. A well-designed prosthesis can potentially allow a person to regain FULL independence and, for some people, even participate in activities they have never tried before!

Jeffrey: Devices are important, but that’s just 30% of our jobs. The rest is psychosocial: lending an ear, giving suggestions, and providing support. We offer adaptive sports events, community events, and educational opportunities in addition to physical mobility support. These elements can help individuals to re-connect with their community and begin building their lives back up again.

We aren’t social workers, but being called social workers is a compliment to our team. It’s vital for us to promote community connections and psychological satisfaction.


What’s the best way to support a friend living with an injury?


Show support for someone with an injury by being an informed listener

Jeffrey: First of all, listen. Prioritize communication and getting to know that individual person’s story and what they care about. Do your own research so you can help to connect the individual with compassionate and competent resource providers in his or her community.

Julie: It is important for family members and friends to attend support groups so that they can talk to others who are sharing a similar experience. Getting involved in activities and organizations like the Challenged Athletes Foundation, Adaptive Adventures, or Athletes with Disabilities will allow you to develop a community of peers with valuable insights.


What is a common misconception about life after injury that you have encountered?


Your health needs and abilities may change over time

Jeffrey: Your lifetime needs will change after an injury. Just because someone feels great today doesn’t mean that will still be the case in two years or five years. Sometimes an individual who is doing great with rehabilitation could still need more equipment or additional resources to truly make progress.


Can financial concerns be a barrier to mobility?


Finances can be a barrier to life-enhancing technology

Julie: A prosthetic leg can cost anywhere from $7,000 to $50,000. This cost depends on the level of amputation and the components necessary to allow a person to reach the activity level they are striving to reach.

Jeffrey: From a patient perspective, our insurance system is broken. Insurance companies view many mainstream mobility requirements as luxuries and consequently won’t cover the cost. That may extend to physical therapy at any level, life-changing medical supplies, replacement supplies, or equipment that must be altered as an individual ages or makes mobility progress.

Some insurance plans will only pay for one prosthetic limb within a patient’s lifetime. If you are someone who relies on a prosthetic limb, you may find that you need a new limb every 6 months based on how quickly you progress with rehab or how your body grows and changes naturally over time. Under your plan, the entire cost of those new limbs would be out-of-pocket for you and your family, possibly for a lifetime.

You may need a new limb every 6 months, which could be an out-of-pocket cost

The irony is evident in this example. Say someone with medical insurance needs a $12,000 prosthetic leg. Research has shown that if insurance companies deny coverage for that $12,000 leg, the patient will end up costing the industry $100,000 or more, because that individual is no longer able to work and therefore contribute to the overall economy.

Insurance companies are in the business of not paying out benefits whenever possible. We combat this reality by opening lines of communications to other patient resources, including organizations like Help Hope Live than can help to relieve the financial burden of out-of-pocket mobility costs.


Jeffrey is the founder and CEO of Ability Prosthetics & Orthotics, Inc. Julie, MPO, MS, ATC/L, is a resident prosthetist/orthotist at Ability Prosthetics & Orthotics in Exton, PA.

Overcoming Barriers With Cerebral Palsy

Hi! I’m Chris Klein and this is my story.

My life didn’t start out like my family expected. My umbilical cord was coming out before me, so the doctors had to perform an emergency C-section in order to save my life. I was without oxygen for 45 minutes and was given CPR for another 40 minutes. I should have been dead, but I survived. However, the lack of oxygen caused an injury on the motor portion of my brain. I have a disability called cerebral palsy.

Chris Klein HelpHOPELive

My disability affects my communication, so for the first six years of my life it was a guessing game for everybody. Do you know how frustrating it is not to be able to express yourself? Do you know how frustrating it is when your parents or siblings can’t understand you? This was what the first six years of my life was like. Every time I wanted or needed something the guessing games would begin. At times, I became so frustrated that I would curl up on the floor and just cry.

At age 6, Judy, my speech language pathologist, wondered if I could use an augmentative alternative communication (AAC) device. She sent us home with one, and by that night, I was already talking in complete sentences. I could finally tell my four older siblings to leave me alone.

I can truly say augmentative alternative communication changed the course of my life. I was put in the regular classroom after receiving the AAC device because I was able to communicate. I was able to show teachers my language was intact and I needed to be challenged more and more. My AAC device also gave me the opportunity to interact with my peers, just like everybody else. The relationships I built were a big part of my growth as a child. I can honestly say without an AAC device I wouldn’t be where I am today.

The AAC device paved the way for me to go to college. I was able to get a degree in kinesiology and a master’s in theology, because I had a way to communicate. The relationships I built in college and seminary grew into a community of personal care assistants. Again, I wouldn’t have been able to develop these relationships without AAC. You need communication to develop any type of relationship, so without my AAC device, I couldn’t have done it.

Chris Klein HelpHOPELive

“You need communication to develop any type of relationship”

Eight years ago, my friends kept bugging me to go on one of the Internet dating sites. You have to understand, I was very happy single, but I decided to agree to it so they would leave me alone afterwards! I didn’t expect to meet anybody I would connect with, but I did. Dawn and I talked for a month before we met. This was her first time experiencing a person using AAC, so talking on the phone and emailing each other helped her get to know the person I am. She had been around disabilities all of her life, but communicating with somebody with an AAC device was different. But she was willing to learn, and as we dated she began to realize how much I could do.

Three years after we met, we were married. It has been a real blessing to have a partner to share life together. Communication is a key aspect to any relationship, so we know if I didn’t have an AAC device, we wouldn’t be married. We have to continue working on our communication, but that’s just normal for any couple in a relationship.

After being unsuccessful finding a job after seminary, I decided to start public speaking. I figured I was given the gift to speak, so I put myself out there. Who would have thought a person who is unable to talk would become a motivational speaker? I have traveled all over the country and even the world speaking to a variety of groups. This is why I came to HelpHOPELive: we are in need of a new accessible vehicle. I have limited my speaking engagements because right now we don’t have a reliable vehicle.

Chris Klein cerebral palsy HelpHOPELive

Chris is fundraising for an accessible van

Everybody deserves a chance to live life to the fullest and dream big. This is why I started an organization called BeCOME: AAC. It stands for Building Connections with Others through Mentoring and Educating about AAC. We want to help beginning users become proficient communicators. We believe having expert AAC users, like myself, coming along side beginning users will help them reach their potential sooner. We know there are some people who are reluctant to try AAC and believe a mentoring relationship with an experienced user will help convince them an AAC device would improve their life. They would also have a chance to impact other people’s lives with an AAC device.

I want to convey through my outreach and writings that life doesn’t have to stop when you have a barrier of any kind in front of you. I want people to overcome the barrier or barriers they have in their lives. I believe too many people quit. We need more people to persevere, so that they can make an impact on other people’s lives. I have to believe my story shows people what you can become if you persevere. I want people to say, Chris Klein ran the race to the best of his abilities.

We all will face some type of barrier, and it is up to us to decide whether or not we can overcome it. I believe the easy way out is to give up. The hardest thing to do is to accept the challenge and live life to the fullest.


We are proud to support community-based fundraising for people like Chris who live with catastrophic injuries, including cerebral palsy, ALS and multiple sclerosis. Know someone who needs help? Visit our website to start a campaign for yourself or a loved one in need.

Life With A Rare Disease For 7-Year-Old Paul Mustol

At 6 years old, Paul Mustol was diagnosed with Duchenne Muscular Dystrophy (DMD). Paul’s family began fundraising with HelpHOPELive in October 2015. Here is a look at life with DMD as told by Paul’s mother, Anna.

Anna and Paul Mustol HelpHOPELive

Paul with his mother, Anna


Describe a day in Paul’s life.


The morning begins with Paul calling to us to remove his nightly leg splints. We carry him downstairs. He takes two medications and several vitamin supplements with his breakfast. He needs assistance getting dressed. A special needs school bus arrives and Paul is loaded on the bus using a lift to avoid straining his legs.

Once he gets to school, he needs to rest before he does his work with the other students in his class. He needs extra help staying focused and understanding assignments. On a weekly basis, he receives therapy from a physical therapist, occupational therapist and speech therapist.

At dinner, he takes a few more vitamins. We practice deep breathing to keep his breathing muscles strong. We stretch and massage his muscles to reduce muscle contractures. We put the splints back on his legs to stretch them during the night.

Mustol family HelpHOPELive

“We…just try to enjoy each day,” says mom, Anna


What’s the most difficult part of the day?


The most challenging part of each day is at the end of the day when Paul is tired and weak. Instead of running around or riding a bike outside with friends, he is exhausted. It is a reminder of what he will face in the future.

We try not to focus on all the difficulties to come, but instead just try to enjoy each day. We want to appreciate the time we have together. It is uplifting to see how Paul has persevered with a smile on his face through the tumult of the last five months since the diagnosis. We feel blessed by the support and love coming from our family, friends and church community. From the minute we shared his diagnosis, people have offered help and have clearly shown us that we are not alone.


What does hope mean to you?


Hope cannot be taken away by a disease. A disease may shorten a life or make it more challenging, but it does not take away the value of that life. We have hopes for him and for his life. We hope that he can see his life as an opportunity to make a positive impact on those around him. We hope that through his disease, he can teach others about perseverance and overcoming obstacles. Of course, we always hope for a cure for DMD.

Paul Mustol HelpHOPELive Duchenne muscular dystrophy

“Hope cannot be taken away by a disease.”


What do you fundraise for?


The average annual cost per person living with DMD is over $50,000. When we first received our son’s diagnosis, we had no idea of the cost involved. Even though it is a genetic disorder, no one in my family had ever received the diagnosis before; it can occur as the result of a spontaneous mutation. Health insurance covers some of the cost, but many expenses are only covered after we meet a high deductible.

We will always need to cover the cost of daily medications, weekly therapy sessions and doctor appointments. He needs tests like echocardiograms or pulmonary functioning tests from time to time as DMD weakens his heart and breathing muscles. Every six months, we travel to the certified DMD care clinic, which is out of our home state.


How will Paul’s needs change in the future?


Because DMD is a degenerative disease, my son’s needs will increase dramatically with time. He will need a power wheelchair full time and an accessible van and home if he loses function in his arms, hands or legs. He may also face surgeries for bone fractures and scoliosis. Eventually, he will need machines to help with breathing and palliative care. The average life expectancy for people living with DMD is around 25 years, but the type of medical care one receives can make a big difference. Today there are more and more cases of people living with DMD living into their early 30s thanks to medical advancements.


How can we recognize Rare Disease Day in honor of Paul?


Think of someone you know in your community that has a disability or is sick. Find a way to show him or her kindness, whether through an act of service or just through a conversation. See the individual as valuable and important; don’t just see his or her disease. If the person wants to share his or her experience with the disease, listen and educate yourself. Ask how he or she is doing, and listen for more than just a standard quick response. If you are able, share your contact information and indicate that you are available to help if the need arises.

Paul Mustol HelpHOPELive muscular dystrophy

Celebrate Rare Disease Day in honor of Paul

The more attention rare diseases get, the more likely it is that researchers and pharmaceutical companies will investigate ways of treating these diseases. Awareness and knowledge also allows for earlier detection and diagnosis.


Follow Paul’s journey with DMD or donate in his honor on his HelpHOPELive Campaign Page. If you or someone you love is living with a rare disease or other catastrophic illness, start a fundraising campaign with our nonprofit to help offset medical and related expenses.

In Times Of Crisis, Love Brings Us Together

These quotes from individuals and families from all walks of life show just how important love and support can be as you strive to meet the challenges before you.

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Love Keeps Us Strong…


“For the love of our son, Nick, we want to be here for him and his able-bodied brother for as long as possible. That’s what keeps us strong and driven.”

Nick and mom for love quotes post

-Judy, mother of Nick Rouse (injured in 2008)


Love Helps Us Thrive…


“We wouldn’t be thriving as well as we are without love. Love in its many forms is what keeps us pushing forward.”

-Kristen and Jeff Sachs (injured in 2013)


Love Keeps Us Going…


“I believe love plays a big role in health. It is family and friends that keep you going and your spouse or partner and kids that give you the fight to carry on and get a normal life back. #NeverRetreatNeverSurrender”

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Michael Carns (fighting MS)


Love Gives Us Hope…


“Love from family or friends gives a person the will to keep pushing and the hope of a better outcome. If everyday struggles become overwhelming, the distraction of love can soothe the soul.

Love is also a powerful tool. While in the Shepherd Center for two months with my son, I saw people who didn’t have any friends or family to support them, whether it was someone to watch a movie with or someone to give them homemade food or a silly gift. Those people did not thrive in recovery, did not smile or laugh, and did not have the desire to get up and do therapy. There was an employee at the Shepherd Center who gave every person and family member a hug, every single day. She knew the power of love.”

-Lori, mother of John LeMoine (injured in 2014)


Love Keeps Us Healthy…


“Love and the time we spend with each other and people who are special to us has been at the center of Suria’s recovery and it has kept us both healthier. There are times when one of us may not feel well, but after a few laughs, it’s like you’ve been given a special pill that can help fix what ails you. Just the act of loving another can make you love yourself more. You’ll find you start taking extra steps to take care of yourself just to keep that good feeling going.”

-Kirby and Suria Nordin (injured in 2014)


Love Motivates Us…


“On this difficult road to recovery, the love God has for me and the love I have for my family is the source of my strength. It is love that gives me the will to work harder than I thought I could and to keep going when so often I’ve wanted to surrender.”

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Joe Piscitelli (injured in 2014)


Our goal is to help people fundraise within their own communities for their medical and related expenses. It’s true that fundraising can help you secure tangible resources, like medication or physical therapy sessions, that improve your health and quality of life. But fundraising isn’t just about money: fundraising gives your friends and family members the opportunity to lift you up and offer you the emotional support that nourishes you as you face your medical burdens.

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Do you know someone who is struggling with medical expenses and is in need of financial and emotional support? Consider helping him or her to launch a fundraising campaign to ease the burden.

Voices of Hope: Living Well With A Chronic Illness

Anna Crum was in junior high school when she began to experience persistent double vision and sixth cranial nerve palsy in her left eye. An MRI revealed that Anna was fighting relapsing and remitting multiple sclerosis (RRMS). Anna explains how she holds onto hope while fighting the debilitating mental and physical effects of RRMS.

Anna Crum MS HelpHOPELive

Anna Crum is living with multiple sclerosis.


How do your RRMS symptoms disrupt your daily life?


Shortly after the diagnosis, I became legally blind and had to learn to read Braille and rely on a cane for mobility. My current list of symptoms has grown to include a different diplopia (double vision) in each eye, color discrepancy, contrast loss, nerve pain on the left side of my face, muscle weakness in my left leg, short-term memory difficulties, fatigue, bowel and bladder dysfunction, and the occasional slurred speech. Without special lenses, I would not be able to read or drive.

My symptoms are unpredictable. On a given day, there is a long list of things that can go wrong. But you try to plan and compensate as best you can to hopefully manage some of the more severe symptoms to prevent them from hindering your daily life.


What has been the most difficult part of your struggle with RRMS?


MS finds a way to keep chipping away at your independence. In my case, it took everything I had to make it through college. Despite my success, I am now living back at home, unable to work full time and leaning on family for support. MS forces you to reach out. Admitting you need help and accepting it can be very difficult, especially if you are naturally an introverted person who is goal-driven and independent.


Why do you think people with MS sometimes hide their illness from the world?


You encounter enough people who don’t understand and eventually you learn to blend in. I have many times described myself as an illusionist and I am sure other people living with chronic illnesses can relate. People don’t see the preparation or the aftermath.

Everything in my life has become so calculated. I plan how much walking I will need to do in a day, how many hours of energy I have, how much my eyes can handle or how much pain I can tolerate ahead of time. Everything is staged. Seldom do I let people see the daily struggle [and] the days where I can’t even get out of bed.


Do you have a resolution for 2016?


This year, I am focusing on transparency, community and relationships. The National MS Society has a saying: “Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.” Too often, people with a chronic illness suffer in silence. When I was first diagnosed, I started advocating for awareness. It was a passion of mine. But eventually I lost the energy. All the energy I had focused on just surviving. Eventually I chose silence for security and traded my voice for a disguise in an attempt to mask my disease.

This year, I want to use my voice again; I want to make an impact. Hopefully my journey will help inspire someone else to keep pushing through. Too often those suffering wait until it’s dire before they reach out for help. Keeping the disease invisible gives it that much more power and it confines you. I want to inspire someone, somewhere, to not give up.


Why do you plan to embrace your MS this year?


At times it feels like a door slams in your face everywhere you turn, but you keep going, one step at a time. Eventually, MS gave me a new path. Because of my disease, I found a passion and hopefully an eventual career as a dietitian. I want to help others manage their symptoms as best as possible, improve their quality of life, and help them learn to thrive despite an illness. Nutrition isn’t a cure, but it can make a huge impact.

Anna Crum HelpHOPELive nutrition

Anna plans to help people with MS manage their nutrition.


What advice can you give to someone newly diagnosed with MS?

Make your health your number one priority. I paid dearly for the instances where my priority became school or some other goal where I pushed myself too hard. Don’t push yourself to go at anyone else’s pace or to meet anyone else’s expectations.

Focusing on what you stand to lose or have lost is too overwhelming. Instead, focus on what your disease adds to your life. This disease builds character, teaches resourcefulness, ingenuity, adaptability, resilience, and gives you a unique perspective. You are stronger than you know, and maybe you can inspire someone with your unique story to find their own strength. Focus on what keeps you hopeful, and hold onto your tenacity.


What does hope mean to you?

To me, hope encompasses endless possibilities. There are always new ways to adapt, a new perspective to discover, new lessons to learn, new relationships to form. There is ALWAYS a reason to keep persevering.


Anna is currently studying to become a registered dietitian and is working on a photography project on the invisible symptoms of MS. She is fundraising with HelpHOPELive for a stem cell transplant that could improve her life with RRMS.

How To Save A Life In 30 Seconds

Blood cancers like leukemia kill more children in America than any other disease. As part of the largest network of bone marrow donor centers in the United States, Delete Blood Cancer has registered more than 600,000 donors and provided over 2,000 bone marrow transplants to patients in need. We spoke to Desirée Chavis, the organization’s communications specialist, about making an impact through bone marrow donation.


What is Delete Blood Cancer’s mission?


We seek to register as many eligible and committed bone marrow donors in the U.S. as possible. We are also an international organization with a presence in 5 countries. Part of our mission is also to bust the myths surrounding donation and try to empower others to be advocates for donation themselves. We want people to know that it takes just 30 seconds to swab your cheeks and register as a potential donor. You could change or even save someone’s life!

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What would you say if someone asked, why should I become a bone marrow donor?


  1. It’s an amazing and unique experience.
  2. Your bone marrow will replenish itself.
  3. Receiving bone marrow can be lifesaving for patients. Without a donor, many face extreme medical, financial and emotional hurdles–you are giving them a precious gift.
  4. Minorities and mixed race recipients can have a harder time finding a donor, so your contribution can really make a difference in their lives.
Nick Karavite HelpHOPELive

HelpHOPELive client Nick Karavite received a lifesaving bone marrow transplant.


What are some of the most common misconceptions about becoming a bone marrow donor?


The biggest misconception is around the methods of donation and the pain involved in donating. Whether you donate through the peripheral blood stem cell method (PBSC) or the surgical method, you’re back in action very quickly. They are both same-day outpatient procedures.

PBSC is used for 75% of donations. With this method, you receive a daily injection of filgrastim 4 days pre-donation to increase the number of blood stem cells in your body, so you may feel like you have the flu for a few days. During the several hour donation, a machine takes blood from one arm, removes the blood stem cells and returns the blood to the other arm. You can use your iPad, read magazines or watch TV while you donate.

A Delete Blood Cancer donates via PBSC

A PBSC donation in progress.

Surgical donation is used in the other 25% of cases. In these cases, surgeons go in with a special syringe (to extract bone marrow) while you are under anesthesia. On average, it takes a little over an hour and you don’t feel anything during the procedure. You can still leave on the same day, making sure that you limit strenuous activity. Most donors describe feeling slightly tender or bruised at the injection site.


Has your work allowed you to hear stories from patients whose lives have been changed by donation?


Our main mission is to save lives; we encounter many rewarding moments while working toward that! Something amazing about our work is that a donor in any country we serve can fill the need for a patient outside of those borders. Up to one year (or two in some places) after transplant, a donor and recipient cannot have direct contact, but after that, if the desire is mutual, they can begin direct contact with each other and even plan to meet.

I remember one incredible story about a recipient in Texas, Larry, and his donor in Germany, Johann. A year after Larry’s transplant, Johann came to visit him in Texas! Larry brought up an amazing point: he and Johann now share DNA. They were basically “brothers” because of Johann’s decision to donate. Larry was so excited to meet him, and Johann was welcomed into a new family. He gained that family by saving a life.

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Larry and Johann were linked by Johann’s lifesaving donation. Source: Houston Chronicle


Go to deletebloodcancer.org to register to be a donor now. Share your donation or bone marrow transplant stories with us on Facebook and on Twitter