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.

4 Things to Remember on World Spinal Cord Injury Day

September 5 is World Spinal Cord Injury Day, kicking off a month of injury-focused content, educational resources, and awareness efforts. This is your opportunity to better understand spinal cord injuries and how they affect the people who live with them. Here are four things you should know.


A spinal cord injury affects every single part of your life.


Spinal cord injuries can flip your entire world upside down in an instant. That impact extends to your family and friends, too. As the World Spinal Cord Injury Day website explains, “paralysis has devastating physical, mental, social, sexual and vocational consequences for the injured. The injury increases the burden on his or her entire support network.”

“The average person doesn’t realize that I am not just sitting,” said Danielle Watson, living with paralysis since 2011. “Sitting is the easy part. I constantly have to think about my bladder, my digestion, my bones, my joints, my body mechanics, avoiding pressure sores, my temperature, my water intake…the list goes on!” Danielle revealed one of the biggest challenges of managing these risks: feeling pressure to keep health issues under wraps. “I usually keep all of this hidden from people,” she said. “I try to portray that I have everything together.”

Danielle Watson Help Hope Live

“Sitting is the easy part,” explained Danielle Watson

As father-turned-caregiver Dennis McGonagle explained, supporting his son Sean’s health following a spinal cord injury “is a minute-to-minute task. We have therapy three times a week, doctor’s appointments, and daily care and companionship needs.”

McGonagle Help Hope Live

Dennis (wearing hat) is a caregiver for his wife Kass (left) and his son Sean

“When the physical manner by which you relate to the world is changed, the emotional nature of that relationship changes as well,” explained Theo St. Francis, living with a spinal cord injury since 2013. “There is an overwhelming feeling of loss that accompanies a paralyzing injury to the spinal cord. In some ways, one’s sense of self fades with the loss of our subconscious daily patterns.” Theo has found it “immensely satisfying” physically and emotionally to pursue specialized therapy to strengthen his body after injury.

Theo St. Francis Help Hope Live

Theo pursues therapy to regain mobility, flexibility, and strength


…but it doesn’t mean you have no life.


You can have a full life after injury that includes everything people without disabilities enjoy, from having a family to pursuing a meaningful career to living an independent life and engaging in hobbies you love with friends by your side.

Mary Ruth Armbruster strove for independence after her 2011 spinal cord injury – and she found it. “I am employed full-time, am a homeowner, and spend my summers camping and enjoying the warmth and my winters downhill skiing.” John LeMoine has enjoyed off-roading, fishing, rock climbing, biking, competing in athletic events, and even skydiving after sustaining a spinal cord injury in 2014.

This slideshow requires JavaScript.

Alex Paul, Richard Travia, and Jeff Sachs can all attest to the possibilities of having a loving and committed relationship or raising kids after a paralyzing injury. “The injury has brought us challenges,” Katie Travia explained, “but our relationship is stronger than ever. Richard is my best friend and soulmate.”

Alex Paul Help Hope Live

Alex Paul can attest to the possibility of love and marriage after injury

Though a freak accident left Kirk Williams with paralysis, “my injury hasn’t stopped me from doing what I love. I still do photography, camp, mountain bike and enjoy wheelchair rugby, scuba diving, hand cycling, and traveling.” Kirk founded a UAV-powered production company and continues to remind himself “that anything is possible.” “Get out there and try everything you can,” he urged.

Paralyzed from the neck down with little movement or sensation, Elizabeth EB Forst still actively travels independently, attends concerts, goes scuba diving, and serves as an advocate for the spinal cord injury community. “Friends seem shocked that I am still just who I was before my injury,” said EB. “My mantra has always been that anything is possible.”

Elizabeth EB Forst Help Hope Live

Elizabeth EB Forst travels, attends concerts, and more after injury


Spinal cord injuries are extremely expensive, even if you have insurance.


According to the Christopher and Dana Reeve Foundation, a spinal cord injury could cost you over $1 million in the first year. You can expect to pay up to $4.5 million over the course of your life depending on the level and severity of the injury.

Even a small home modification could cost $5,000 or more out-of-pocket. Need a new power chair? That’ll be $20,000 and up, and insurance may not cover it. If you want to pursue physical rehabilitation to improve mobility after an injury, you may have to come up with $20,000 or more to cover one year of therapy alone. Could your family handle these out-of-pocket costs without help?

SCI costs

Just a few of the costs individuals living with a spinal cord injury must cover

Eric LeGrand has been one of the most visible spinal cord injury advocates following his 2010 injury he sustained playing football for Rutgers University. He and his family were shocked by post-injury costs. “When it was time for me to leave the hospital, I realized I wouldn’t be able to move around my home with my wheelchair,” he said. “We had to completely rebuild the house from the ground up. The cost is huge.”

As Eric noted, skip the essentials and you risk experiencing isolation or burdening others: “Without my chair, I would be trapped in my room. I’m lost without my phone, and technology has helped me with my quality of life. I don’t have to rely on family or caregivers to do everything for me, but insurance won’t pay for at least half of what you’d think they’d pay for.”

Why so little support from insurance for post-injury care? “Our insurance system is broken,” explained Jeffrey Brandt, founder and CEO of Ability Prosthetics & Orthotics, Inc. “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. Insurance is in the business of not paying out benefits whenever possible.”


…but help is out there.


Most individuals living with a spinal cord injury cannot navigate the physical, emotional, and financial burdens on their own. One way to make a difference on World Spinal Cord Injury Day is to share our website with someone who might need our help.

If you know a family coping with a spinal cord injury, help them understand how fundraising could positively change their lives. They can reach Help Hope Live via phone at 800.642.8399 or online at helphopelive.org to find out if our nonprofit fundraising solution is the right fit for their situation.

It’s National Dog Day!

Guess why we’re wagging our tails? National Dog Day is here! We have heard countless incredible dog stories here at Help Hope Live, from service dogs with amazing skills to never-leave-your-side canine companions who ease the burden of a painful diagnosis.

The purpose of National Dog Day is to celebrate ALL dog breeds and acknowledge what a difference a dog can make in our lives, whether for companionship, protection, or disability and illness support. You can join us in celebrating National Dog Day this year simply by spending quality time with your favorite canines!

Here are a few tributes to the power of paws from our clients.


“Until three days ago, I didn’t fully understand the significance of a therapy dog. A dear friend of mine adopted one for me, knowing I was looking for a lap pup to be my companion as I wait for two new lungs, and to help me transition post-transplant.

In just under 72 hours, Sadie, my 8-year-old rescued Pughasa, has, in fact, rescued me.

I’m usually a glass half full (or more) kind of person, always looking for the lessons in life as I deal with a lifelong illness resulting in 9 months on the waiting list for a bilateral lung transplant. My strong faith pulls me through most times. Lately, I’ve been dragged down – perhaps by the intense heat, perhaps the unknown of when “the call” will finally come. All I know is that the bad days have recently surpassed the good. My friend Ann heard it in my voice as I was fighting the self-pity tears.

Now, my life has changed in a way I wasn’t quite prepared for: this little abandoned dog worked her magic in my heart within minutes. And doesn’t she know it!

The love in her eyes when she gazes at me is only matched by the love in mine. She basically won’t leave my side, although the other full-time human in our household, my husband, Steve, may provide some intrigue for her from time to time! Look at that underbite – how can you resist!

If you are dealing with an incredible difficult health issue, or an emotional one for that matter, please consider a rescue dog. My load has been made so much lighter as I tend to this newest addition to our family. It takes the focus away from my daily challenges to love on the most adorable 4-legged that has ever walked this Earth. Really – I’m serious!”

From Rachelle Ledbetter, Southwest Lung Transplant Fund


This slideshow requires JavaScript.

“Our furry friends are Mari and Fozzie. Fozzie is training to become Marisol’s service dog. We hope that he can assist Marisol with her PTSD, learning to recognize before she has an anxiety attack to help her calm down. Fozzie will accompany Marisol at the hospital and at school.”

From Marisol Ramirez, Mid-Atlantic Multi-Visceral Transplant Fund


This slideshow requires JavaScript.

“I got Vedder when my middle sister passed away. He was her dog. Vedder was with me for the two years when I was on peritoneal dialysis, by my side every single night as I hooked up to the machine.

When Vedder passed, I got Bailey, four years after my kidney transplant. Bailey helps me to stay focused and busy post-transplant.”

Frances V Gilmore, South-Atlantic Kidney Transplant Fund


This slideshow requires JavaScript.

“Owning a home in the mountains in Colorado has some lovely perks, but it can pose quite a few challenges for a wheelchair user. Wheeling to the post office one day with a Border Collie that I was dogsitting, I started getting fatigued on the last hill. It made me think, “I want one of these of my own…but I need a dog that can PULL!

I called a friend who trains service dogs and we discussed what I was looking for in a dog. Soon after, she found a Shepherd-Lab mix with a strong body and a great mind – a lady ready for the job!

The folks at Paws in Hand Canine Consulting are helping to train her in pulling, tugging, and retrieving with the eventual goal of having my dog pull me in my wheelchair, tug heavy doors open, shut doors behind me, drag heavy bags or boxes, retrieve objects from another room, and lay by my consistently-cold legs to help keep them warm.

I cannot wait for this new addition to my life and to build a relationship with a dog that can help me go farther and accomplish more every day.”

From Mary Ruth Armbruster, Midwest/West Spinal Cord Injury Fund


We hope you’ve enjoyed these special stories of love and support. Do you have a dog story to share? We’d love to hear it! Tag @helphopeliveorg on social media and share your special memories with us.

Pokéthon Revive: A Week of Gaming and Fun Spreads Hope

From July 23- 28, 2017, gamers united to play Pokémon games from X & Y to Sun & Moon live on the streaming platform Twitch to raise money for Help Hope Live. It was a week of memories and milestones, with 740 total donations and 32 in-person attendees!

This slideshow requires JavaScript.

In case you missed them, here are a few of our favorite moments:

  • Ample pie-in-the-face-ing
  • The return of the classic and widely-feared challenge Mr. Smith’s Soda Machine Suicide
  • Our first-ever opportunity for Help Hope Live clients to participate in the marathon and tell their stories on stream
  • Director AWildAbra gets hot dog’d
  • A violin serenade by popular demand
  • Getting selected as the beneficiary for the next Pokéthon!

The marathon wrapped up with a jaw-dropping total: $15,152.87 raised for our nonprofit!


How Your Pokéthon Revive Donation is Used


While you may have made your Pokéthon Revive donation online, that doesn’t mean an errant Porygon whisked it away to be sealed in cyberspace forever. Every donation made to Help Hope Live during Pokéthon Revive makes a difference. Here are a few examples.


You provided clients with compassionate and personal support during a time of crisis.

Sometimes the emotional weight of a medical crisis can be as hard to bear as its physical and financial impact. Your donation allows us to do our part in relieving that burden and showing clients that they are not alone in the challenges they are facing.

“You have no idea what our Help Hope Live Fundraising Coordinator’s emails have meant to me today. I prayed on the way to work that I would hear from someone at Help Hope Live today, just to know that there is someone out there on our side. Thank you, thank you, thank you.” -Heather Stuart, cousin of our client Elise Salsberry, Southeast Spinal Cord Injury Fund


Since Pokéthon Revive, you helped 20 people receive medical fundraising support for the first time.

20 clients have started fundraising with us since Pokéthon Revive. Your donation makes it possible for us to reach new people and bring them into the Help Hope Live family.


Since August 1, you helped 360 clients cover vital but uninsured medical expenses.

For some clients, the financial help they receive through fundraising can literally be the difference between life and death:

  • Raise enough to be put on the transplant waiting list
  • Cover post-transplant immunosuppressant medications that prevent rejection but can cost thousands out-of-pocket every month for the life of the organ
  • Put voice-activated emergency communication technology within reach for individuals with a spinal cord injury who are living alone

For others, fundraising makes it possible to achieve a new level of independence, mobility, or quality of life:

  • Allow a client to return to being an active and engaged community member through accessible transportation
  • Enable home modifications so an individual who has experienced a spinal cord injury can leave a treatment facility and return home to his or her family
  • Offset experimental treatments that may provide relief to clients living with a catastrophic illness
  • Help return mobility to clients with a spinal cord injury or traumatic brain injury through intensive physical therapy that can cost hundreds per hour out-of-pocket with no help from insurance

A Marathon to Remember


We wanted to get a sense of what makes the wheels turn for this beloved volunteer-run event. We spoke to James Bishop, director of Pokéthon, to find out.


What inspired you to start Pokéthon?

I was inspired by the charity efforts of other streamers and content creators. The first marathons I ran took heavy inspiration from the Extralives series of marathons, while later ones took inspiration from Zeldathon.


Where does your love of the Pokémon games come from?

When I was young, I moved frequently. Without having friends nearby and being a gamer, I heavily latched onto the Pokémon series of games and, in turn, the games’ emphasis on sharing Pokémon with others helped me find friends. The games have stuck with me ever since.


How does the gaming community support these events?

The gaming community can be fickle at times, as it’s full of a diverse set of people with various opinions. Charity marathons constantly unite this amazing community together: no matter which platform or developer you like, any gamer can get behind the idea of gaming for good.


What have been your biggest challenges?

The largest difficulty I faced doing Pokéthon was the transition from a house marathon to a hotel marathon. Moving from something I could do in my own living room to something in a hotel is a major step and it has been a daunting challenge. It’s important to me to run these events despite the challenges because I have always had an internal drive to make sure that the things I love also give love to others. I love gaming, the Pokémon franchise, and my friends, and this is a way to express that love and help others with that love.


What advice would you give to someone who wants to start their own charity gaming marathon?

Don’t be afraid to ask questions. People like me who help to run these events are always happy to help however we can. If you need advice, ideas, and tips, anyone in the community can help.


Does the success of this marathon depend on unpaid volunteers?

YES! From each attendee to the developers and all the people who help spread the marathon in their own special ways, there are countless people who help the marathon advance. I thank every one of them. We don’t take a single penny of the funds raised during the marathon: all proceeds from Pokéthon benefit Help Hope Live.

I probably devote 10-20 hours personally per week to Pokéthon between organizing the marathon, video editing, planning, meetings, and development. Less than a year ago, I established a Patreon where people could donate to me to help with marathon expenses. I receive payment but only from this loyal group of personal digital sponsors via Patreon.


Why do you think people enjoy Pokéthon so much?

There is an excitement to it all: it’s like reuniting with a group of friends you only get to see a few times per year to have a week-long party to play games, have fun, and do something good for others.

These events help me bond with my friends in so many ways, and I love getting to do this with them. I can’t pick one single memory out because the community has just given me so many.


Why did you choose Help Hope Live as the beneficiary for this event and the next one?

Help Hope Live came onto my radar when I met some of their amazing representatives at Zeldathon Hope. There, I saw an amazing passion, and I knew I had to learn more about them. After time with Help Hope Live’s employees and reading up on their mission, I was hooked, and I devoted the next Pokéthon to them.


What are three ways people can support the next Pokéthon?

  1. If you can save even a little, even the smallest donation can help. The largest portion of our marathon total typically comes from small donations.
  2. Spread the word! Tell anyone and everyone who might be interested to help get the word out.
  3. Follow us on Twitter and Facebook to help the community gear up for future events!

Stay tuned to Help Hope Live and Pokéthon on social media and you’ll be the first to know when the next Pokéthon to benefit our nonprofit is announced! Thank you for your generous support!

Live It Up! and Celebrate Hope with 3 Inspiring Stories

It’s that time of year again! On Thursday, October 19, join us at a new location, The Inn at Villanova University, from 6 p.m. to 9 p.m. for our 5th annual Live It Up! gala. You’ll enjoy great food, an open bar, silent and live auctions, raffles, our sought-after Wine Pull, and our 2017 Help, Hope, and Live Awards presentation.

Purchase tickets or sponsor our event at 501auctions.com/LiveItUp

This slideshow requires JavaScript.

Our Help, Hope, and Live Awards recognize individuals who exemplify our work and mission. Let’s meet this year’s Help, Hope, and Live Award recipients!


Help Award for excellence in mentorship: Bill Soloway


Heart Recipient and Peer Mentor “Spins” to Win


Bill is dedicated to being a peer mentor for transplant candidates and fellow recipients

  • Bill is an avid cyclist and a skilled craftsman
  • Diagnosed with hypertrophic cardiomyopathy in the mid-90s
  • Put on the transplant waiting list for a new heart in 2015
  • Began fundraising for Help Hope Live as a part of the Mid-Atlantic Heart Transplant Fund in April 2015
  • Received “the call” for a heart transplant in June 2015
  • Was back on his bike 10 weeks later
  • Appeals to his community with community get-togethers like Pizza For a Purpose, plus unique events based around his love of cycling like a Spin for Soloway sponsored cycling marathon.
  • Dedicated peer mentor to transplant candidates—he has used his own personal experience to help dozens of patients by visiting the cardiac wards at HUP where received the gift of life
  • Spreads awareness about the importance of organ donation through his participation in the Gift of Life Donor Program and events like the Transplant Games

Bill preparing for the Transplant Games in 2016. Photo: Bucks County Courier Times


Hope Award for the gift of life: Joe Berardoni, Sr. and Joe Berardoni, Jr.


Father-Son Toy-Shop Owners Triumph with Transplantation


Joe, Sr. received a kidney from his son (right). Photo: Main Line Media News

  • Father and son ran a beloved local toy store for more than three decades
  • Joe Berardoni, Sr. was facing his second kidney transplant in 10 years
  • Joe Berardoni, Jr. was the first to call and offer to be tested to become a living kidney donor to save his father’s life
  • In 2012, Joe, Jr. donated his kidney to Joe, Sr.
  • Today, Joe, Jr. remains connected to the transplant community through his volunteer work, serving on several Help Hope Live committees

Joe, Jr. volunteered to help plan Live It Up! in 2016


Live Award, for inspiration after injury: Lauren Shevchek


Swimmer with Paralysis Commits to Recovery – and Helps Others Avoid Injury


  • Competitive youth swimmer
  • Sustained a spinal cord injury in a diving accident in 2013 at age 19
  • Lost all motion and sensation from the chest down; diagnosed with complete quadriplegia
  • Continues to regain feeling and mobility through her extreme dedication to rehabilitation (video above) and living a healthy and holistic lifestyle
  • Speaks publicly about the dangers of diving to reduce diving-related injuries, which are 100% preventable: “IF YOU CAN’T SEE THROUGH IT …  DON’T DIVE INTO IT!!!


Join us on October 19 at The Inn at Villanova University to meet these honorees in person along with Help Hope Live staff, board members, supporters, and friends. Let’s toast to another year of hope in action!

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.

A Tribute to the Gift of New Life

During Donate Life Month in April, we asked you to enter our Touched by Transplant “New Life” Contest by telling us how transplantation has impacted your life. We shared stories from our 4 winners during May and June, but we can’t resist the chance to share a piece of ALL of the incredible “new life” testimonies. Here they are.

Touched by Transplant 2017 Help Hope Live


Amanda Washek Help Hope Live

“I had a living liver donor. Her name is Madalyn and she is my hero.

As I write this, I am nearly a year post-transplant. I lost the girl I was in May 2014 when the letters PSC were first uttered. But I gained more than I ever imagined. I have a greater appreciation for life.

I am utterly in love with feeling like a human being. I love waking up each morning and remembering that my liver works. I can take long walks with my husband. I can climb mountains. I have a future. And it is all due to the Lord, my donor, and my surgeons. I am forever indebted.”

Amanda Washek, South-Atlantic Liver Transplant Fund

Transplanted August 11, 2015


Annie McMahon Help Hope Live

“I am so grateful for my donor on my 6-month lung-iversary! These past months have been an amazing experience and I can’t wait to see where my new lungs take me. Every day my donor will be on my mind and in my prayers. I am so gracious for this amazing gift I have received. My donor is what lifts me.”

Annie McMahon, New York Lung Transplant Fund

Transplanted December 2016


Brian McCormick Help Hope Live

“Brian received his lifesaving heart and kidney transplant in the early hours of April 13. Words cannot express our gratitude towards the donor and their family.

An LA Times reporter was kind enough to connect us to former Major League Baseball player and coach Rod Carew, who underwent the same surgery in December 2016. Brian received a special phone call from Rod.

We are thankful to see Brian smile again. We want to promote the importance of organ donation not only in April during Donate Life Month, but year ‘round. Keep the pinwheels spinning!

-Wife of Brian McCormick, Great Lakes Heart/Kidney Transplant Fund

Transplanted April 13, 2017


Christopher Anthony Zerfass Help Hope Live

“At 24 years old, receiving the gift of life from my father has allowed me to see what else life has in store for me. Every day I wake up thankful for this opportunity my dad has given me.

Since the transplant, I have grown closer to people that mean the most to me and made new friends. I have fallen madly in love with the girl of my dreams, Meghan, and we’re getting married in September and are in the process of buying our first home.

My new (61-year-old) kidney has allowed me to experience so many beautiful things in life! There is no greater joy in the world to me than to be surrounded by the amazing people I have in my life.”

Christopher Anthony Zerfass, Mid-Atlantic Kidney Transplant Fund

Transplanted September 10, 2014


Deborah Hopper Help Hope Live

“I received a double lung transplant in 2012 and I’ve been in chronic rejection since 2015. Despite this diagnosis, I’ve actually been doing pretty well. I’m still able to do some things and enjoy myself.

My two dogs and my husband, Mike, are the loves of my life. I’m able to take our dogs on walks, something I couldn’t do before transplant. My husband does so much to lift my spirits. My health could be better, but life is good. And I take it as it comes.”

Deborah Hopper, Northeast Lung Transplant Fund

Transplanted May 3, 2012


James Michael McLester Help Hope Live

“Though it was a long and very difficult road, I know God has blessed me in so many ways. A friend did the most selfless thing one can do for another: she was willing to lay down her life as she donated one of her kidneys to me.

My health has been remarkably good since the surgery. It feels nothing short of a miracle to wake up and sense your body becoming stronger, your system cleaned of toxins and waste, and dialysis no longer needed.”

James Michael McLester, South-Central Kidney Transplant Fund

Transplanted December 9, 2015


“I was at Baylor University Medical Center in Dallas this week for MRI labs. It hit home when two ladies in the lab who were waiting for bloodwork talked about one giving the other her kidney. As I continue to wait for a liver transplant, it’s awesome just to be part of those kinds of conversations.  We are blessed.”

Janet Martin Kafer, South-Central Liver Transplant Fund


Josh Bulvin Help Hope Live

“I don’t know how to send pictures or videos to you, but I do know how much I appreciate living. In the past seven years, I have had a second chance at life. I now have two beautiful grandchildren. I thank God and my donor every minute of the day for my life. I would like to thank Help Hope Live for such wonderful service. God bless us all.”

Josh Bulvin, Mid-Atlantic Heart Transplant Fund

Transplanted March 10, 2010


Joseph Dinas Help Hope Live

“Joe was the youngest of five children. His parents carried genes that would end up fighting each other and destroying the lungs of three of the four boys in his family. Joe’s two older brothers died of pulmonary fibrosis before they could be transplanted.

Joe was placed on the transplant list. On the evening of March 24, 2015, we got a call in the middle of the night. Joe was sleeping so soundly that I hated to wake him. Joe was dreaming that a woman said to him that she was leaving this world and that she was giving him her lung.

I had so many emotions, excited, nervous, and sad thinking someone lost a loved one for this to happen. And then in the next moment so very, very appreciative that they provided us a chance of having more time and more life together.

Joe came home in record time. We are still going strong and are so appreciative of the person who gave us BOTH the gift of life.”

-Wife of Joseph Dinas, Southeast Lung Transplant Fund

Transplanted March 24, 2015


Joseph Ozoniak Help Hope Live

My new life is also a new start. I am able to move closer to my transplant center for check-ups and future care.”

Joseph Ozoniak, South-Atlantic Heart Transplant Fund

Transplanted May 28, 2011


Kevin Jamieson Help Hope Live

“For the first time in ten years, we finally took a trip we had been planning. We took a trip to Denver to visit family and celebrated our freedom in life. God is our co-pilot.”

Kevin Jamieson, Southeast Liver Transplant Fund

Transplanted October 23, 2015


Maylin Palma Help Hope Live

“God and all kinds of people have given me my life back little by little. Because I’m back on track in my life, I can enjoy it every second, which is the case only for people who pass through this kind of experience. We learn how precious life is. I’m giving back to my community, working in volunteer medicine, helping people in need and giving them self-esteem and the hope that they can get back to a normal life. We need to share this love with the world!”

Maylin Palma, Great Lakes Kidney Transplant Fund

Transplanted July 21, 2015


Pat Donovan Help Hope Live

My prayers were answered in July when I received a bi-lateral lung transplant. My new life had begun. I could talk and laugh with my family again without coughing. As my recovery progressed, I began to imagine once again the activities I enjoyed before idiopathic pulmonary fibrosis.

My recovery was so successful that in February I was able to go for a 40-minute snowshoe trek with my wife, Kim, and our daughter, Laura, a favorite winter activity that I haven’t been able to do for the last six years. I was able to blow out my birthday candles at my 60th birthday.”

Pat Donovan, Northeast Lung Transplant Fund

Transplanted July 31, 2016


Susan Dow Smiley Help Hope Live

“It means bringing new life into a body oxygen depleted

Returning to activities without being tethered and seated

New opportunities, new beginnings have started

The faces of loves ones not broken hearted

An ending rescripted

A future unrestricted

Hearts uplifted

Time gifted

The ability to breathe without difficulty and strife

Lungs reconstructed by a surgeon’s knife

My joy is great, my heart is full

Thankful to God, I am eternally grateful.”

Susan Dow Smiley, Southeast Lung Transplant Fund

Transplanted February 18, 2017


Tom Cumming Help Hope Live

“Tom had a five-organ transplant at Jackson Memorial Hospital in December. He is doing good: all of the organs are working, thanks to the donor. We waited for two years. We are hoping to go home soon. It has been an adventure.”

-Wife of Tom Cumming, Southwest Liver Transplant Fund

Transplanted December 2016


Victor Melendez Help Hope Live

“My husband, Victor, received his kidney on December 8, 2016. This was the greatest gift that our family could ever receive. My kids love seeing their daddy happy and healthy. We are enjoying every minute with him and making lots of memories together.”

-Wife of Victor Melendez, New York Kidney Transplant Fund

Transplanted December 8, 2016


Touched by Transplant 2017 Help Hope Live

If you know someone who needs help covering transplant-related out-of-pocket medical costs, start a fundraising campaign in his or her honor with help from our nonprofit at www.helphopelive.org.