Category Archives: Catastrophic Injury

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.

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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.

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.

Living with Quadriplegia, “Anything is Possible”

In August 2014, Elizabeth “EB” Forst, a doctor of physical therapy, was working as a travel orthopedic physical therapist when she sustained a C4-5 spinal cord injury in a diving accident, leaving her completely paralyzed from the neck down with little to no movement or sensation.

Prior to her injury, she was independent, active, and adventurous. She had competed in six triathlons, traveled extensively all over the world, was an active and advanced scuba diver, loved live music, practiced daily yoga and meditation, and even attended and worked at the Burning Man festival for 13 years. She has been fundraising with Help Hope Live since September 2014. This is her life now.

Elizabeth EB Forst Help Hope Live

EB is still “independent, active, and adventurous” after injury


How does your life look different today than it did right after your injury? 


Initially, because of my heightened medical state and complete paralysis, independent living was absent in my life. I was at the mercy of local health care agencies, where the caregivers had little or no experience with individuals recovering from a spinal cord injury. The care was downright poor. I had to identify and personally train local caregivers to support my health needs a.m. and p.m. This is the first mountain to climb after injury–educating and directing others on health care needs is exhausting as you onboard new team members, which even today happens often as my team shifts.

With my current team in place, I have greater control over my life. I am so grateful for this group of women who take such great care of me every day. Along with my ever-supportive family, they are my lifelines.

Elizabeth EB Forst Help Hope Live

Living independently was out-of-reach when EB was first injured

Finances have changed. Initially, with no work income and my dependence on Colorado Medicaid, I was paying exorbitant out-of-pocket costs for my certified nursing assistants (CNAs). Fundraisers with Help Hope Live helped my family foot the bill for many of my out-of-pocket costs that were causing me to feel like I was a financial burden. Luckily, Colorado is one of only a handful of states in the country that supports Consumer-Directed Attendant Support Services (CDASS), which, with approval from the state of Colorado, allows individuals like me to receive financial assistance from the state to pay my support team as I see fit, including CNAs, family members, and personal assistants. I break free of utilizing health care agencies and pay my own personally-trained staff.

My independence has improved with the assistance of my CNAs, personal assistants, and new technology within the home. I am an active advocate for the spinal cord injury community both nationally and locally. I travel often and take advantage of the beautiful outdoors here in Colorado as well as the live music scene. Red Rocks amphitheater is a favorite in the summer.

Elizabeth EB Forst Help Hope Live

EB loves catching shows at the Red Rocks


What are some of your hobbies today?


My biggest pre-injury hobby was travel and so being able to travel and find adventure after injury was paramount. With a lot of training and maybe a little bravery, I’m happy to say that I have flown over 15 times since my injury to places like New York, San Francisco, Los Angeles, and South Carolina.

I was an advanced scuba diver pre-injury, and I completed my first post-injury scuba dive last year in Mexico with the assistance of the therapeutic recreation department at Craig Hospital. As a team, we tackled 10 dives in just five days, with the deepest dive at 95 feet—quite a feat for a high-level quadriplegic! My dive buddies supporting me underwater were not able to learn what I needed via signaling from my body, so instead, we communicated intuitively by looking into each other’s eyes.

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While not all of my physical hobbies are still within reach today, I try to maintain a connection on a physical and spiritual level with the things that are attainable.


You were extremely active before your injury. How do you stay active today?


I go to the Craig Hospital PEAK Center every week and use the Lokomat and standing frame for extended lengths of time. I stretch with a physical therapist and use an FES bike to stimulate circulation and mobility; my CNAs do range-of-motion exercises with me every single morning and night. I receive acupuncture twice weekly and massage once weekly to stimulate my spinal cord and encourage return of mobility and sensation. The road is long but I try to stay focused.

Elizabeth EB Forst Help Hope Live

Therapy is a regular part of EB’s life after injury

I understand the extreme importance of staying active because of my background in physical therapy; it’s crucial to prevent healthcare issues that plague those living with quadriplegia, such as blood clots and pressure sores. Recently, I have been getting some return in my right arm, enough so that I can transition from sip and puff wheelchair technology to hand driving. This has been a huge accomplishment directly correlated to continual rehab efforts, even three years out from injury.


Do you think most people with spinal cord injuries have adequate access to health care and adaptive mobility necessities?


Absolutely not, and it’s a big problem. Health care access often depends first and foremost on proximity to a medical or rehab center that understands and is equipped to support individuals with a spinal cord injury. The unfortunate reality is there is a lack of such medical facilities–for example, San Francisco, a major metropolitan city, does not have a spinal cord injury center in the entire city. I am very lucky to live near Craig Hospital, which is a top-of-the-line SCI resource center.

Each spinal cord injury is a snowflake – different from the next – so it requires a tremendous amount of education and advocacy during medical visits to ensure medical professionals can support basic health care needs.

Elizabeth EB Forst Help Hope Live

“Every spinal cord injury is a snowflake – different from the next.”

Adaptive mobility can be a real issue as well. I experience these problems frequently when I travel, as basic transportation like taxis, rental cars, Uber, and Lyft are not readily equipped for individuals in power wheelchairs. Case in point: I was stranded in my hotel in downtown San Francisco on a recent trip because I could not locate a single accessible car. I missed dinner and plans that I had scheduled in the city because of this void of mobility access.


Is mobility support for people with injuries improving? Any examples?


I feel like there are no limits to what someone with quadriplegia can do today, especially with exciting improvements in technology. Craig Hospital’s technology department has helped me create an independent household – I’m able to electronically enter/exit my apartment without assistance, control my TVs/remote controls using sip and puff technology on my wheelchair, and use my computer with a specialized mouth-driven stick. Amazon’s Alexa speaker tower helps me control my lights, thermostat, phone calls, and text messages–crucial if I ever needed to contact 9-1-1 independently.

Elizabeth EB Forst Help Hope Live

Family support helped EB build an independent life over time


Can mobility costs become a financial burden after a spinal cord injury?


According to the Christopher & Dana Reeve Foundation, the first-year cost of injury-related expenses can top $1 million. That includes lifelong expenses like durable medical equipment, wheelchairs, room lifts, specialized beds, prescription medications, caregiving costs, plus the astounding cost of physical therapy that many insurance companies will not reimburse. For example, I pay $79/hour out-of-pocket at Craig’s PEAK Center twice weekly, $60/hour for acupuncture once weekly, and $100/hour for specialized physical therapy for my shoulder if I have anything left over. Many of these therapies are crucial to improved rehabilitation and basic overall health.

Traveling requires purchasing a specialized travel lift and budgeting for higher-end accessible apartments away from home or special hotel rooms. For someone with a spinal cord injury who can’t work, you have to ask: where is all this money supposed to come from?

I have three Help Hope Live fundraisers completed, but fundraisers truly only scratch the surface when you look at a long life of such requirements. Recurring donations to Help Hope Live are a really helpful source of support between events.


What are some of the biggest misconceptions about life after injury?


There is a persistent misconception that all people living with an injury or wheelchair have cognitive impairment. Friends seem shocked that I am still just who I was before my injury – same voice, same fervor for life. They say, “You still sound like yourself,” with surprise. And I just say, “Obviously!”

Elizabeth EB Forst Help Hope Live

“I’m actively participating in life to the nth degree after injury.”

Another big misconception is that you stop being able to actively participate in life after a spinal cord injury. My mantra has always been that anything is possible, and clearly, I’m actively participating in life to the nth degree after my injury. My friends say to me now, “You’re doing more after your spinal cord injury than I have ever done!”


What are you looking forward to in the immediate future?


I get excited about the light of the future, including adaptive technology and research advances to help find a cure for spinal cord injury. I look forward to improving advocacy efforts nationally as well as here in Colorado, to help augment the realization that the disability community is highly capable of working and being an important asset to each of their communities. I look forward to becoming an ambassador for the Christopher & Dana Reeve Foundation on a national level and the Chanda Plan Foundation on a grassroots level.

I am often told that I am an inspiration to others in the spinal cord injury community. Although it is meant as a compliment, it is not my intention to be an inspiration. I am just living my life, the same way it was before my injury, not allowing my paralysis to define me.

Elizabeth EB Forst Help Hope Live

EB is a proud ambassador for multiple spinal cord injury support platforms


Elizabeth EB Forst fundraises for the Midwest/West Spinal Cord Injury Fund. Click or tap to follow her Blog.

Diving Deep: Learning to Stand, Snorkel and Reclaim a Sense of Self

Theo St. Francis has been exploring the world of body-connection since his 2013 C6 spinal cord injury at the start of his Mechanical Engineering studies at MIT. Having been opened to a whole new way of being through his practice of Pilates, he is working to make mindful movement a standard in neuro-recovery.

He has been fundraising with Help Hope Live for intensive physical therapy and cutting-edge rehabilitation since June 2014.


What would it feel like to be able to just jump – and start flying? Well, I don’t know, and the birds won’t say, but I’ll bet the experience would be indescribable, and ‘indescribable’ is something I know.

Since my body has been partially paralyzed for almost three years, it is understandable that I’ve forgotten what some things feel like. That’s how our plastic, use-it-or-lose-it brains work: the subconscious patterns of walking and standing, of dancing without thinking, don’t get reinforced when the muscular connection isn’t present.

This is part of the overwhelming feeling of loss that accompanies a paralyzing injury to the spinal cord (SCI) because, in some ways, one’s sense-of-self fades with the loss of those patterns. When the physical manner by which you relate to the world is changed, the emotional nature of that relationship is changed as well.

Theo St. Francis Help Hope Live diving

“One’s sense-of-self fades” with the loss of familiar physical patterns


A flash…


One day in May, I noticed something strangely familiar during my regular 3-hour neuro-Pilates workout. We prepared to use a trapeze table, or trap table, a piece of Pilates equipment with a wooden bar hanging by springs from a frame. For some time my trainer and I had been stumped – I had developed feeling in my hip muscles while kneeling, yet when on my feet, my system turned off.

trapeze table Pilates

An example of a Pilates trapeze table

On that afternoon, we incrementally raised my knees on foam wedges until my feet were on the floor; with my hands on table-uprights, the vertical bars at each end of the trap table, and an arc blocking my knees, I lowered myself into a squat and, for the first time ever, pressed back up to standing!

“Wow, so this is what it feels like to connect to my legs!” was my first thought, and after the third unsupported squat, I felt a visceral excitement and had a fleeting image of letting go of the trap table, turning toward the door, and just walking outside. It was as if my body just remembered its own capability. Can you imagine? It was glorious. Indescribable!


Progress has been from many directions


Since my injury in Boston Harbor in August 2013, I have received care from experts in hospitals, rehab centers, SCI CrossFit gyms, Eastern medicine enclaves, and Pilates studios. I’ve learned from a variety of therapists with different but overlapping skills and set up equipment in our home to extend workouts throughout the day and evening. I feel very fortunate to have found the talented members that comprise my rehabilitation team.

Throughout this extensive process, the unflagging assistance of my family members has been invaluable. Their efforts– from the early days in the hospital to working with the medical staff and learning the techniques that would help me in daily activities to seamlessly managing logistics until I could do so myself–have been essential, both in the acts themselves and in the time and space they’ve created for me to pursue my therapies with rigor.

Also significant in my recovery, has been working with the Neuro-Kinetic Pilates specialists on Maui. In my most recent sessions there this June, I was able to find my own lateral hip strength in a stagger-stand position. I have been working to achieve this stability since I first muscularly connected my torso 18 months ago. It is immensely satisfying to finally achieve this result.

Theo St. Francis Help Hope Live rehab

“It is immensely satisfying” to regain physical ability at any level after injury

While all of this bodily improvement was happening, something even more significant occurred between my sessions: independence…in two ways.

For the first time really ever, this 21-year-old lived completely by himself. In truth, it was for less than a week – friends and family visited me on the island at other times – but, even so, after all I was told by doctors about the purported permanence of my paralysis, to be able to thrive on my own was a turning point in my recovery.

I am quite aware that this independence has only been achievable through the incredible support of so many over the last few years, especially all of those who have helped me and my parents with fundraising and driving to therapy appointments. My family is sincerely grateful for the support of so many people through Help Hope Live that make it possible for me to pursue the most effective recovery treatments. This sense of wonder for the gifts of support is also indescribable.


Diving deep


The second form of independence was very different. The day I fractured my C6 vertebra was less than a week before my first practice on MIT’s Varsity Swim Team, to which I’d been recruited as a backstroker. Even with all my progress since, I still require a hip-float to stay above water. That’s fine; except when I was in Maui swimming above scores of fish, coral, and turtles along the reefs 10 feet below. There was no way I was going to forgo some of the world’s premier reef-level snorkeling by being bound to the surface. Confident in how my improved core strength enabled me to control my breathing, I unclipped the float, handed it to my friend, and madly used my arms to fight the saltwater’s buoyancy. After some practice, I became comfortable descending over 20 feet and, on my last day on the island, I swam floatless for a full 40 minutes.

To me, going floatless is about far more than being eye-to-eye with Reef Triggerfish. It’s about stripping away the support I think I need to discover my true abilities, and in so doing, rediscovering that sense of self. It’s about diving deep into a fear, a perceived limitation, and returning to the surface with new appreciation for what is possible.

Through these moments of ecstatic, indescribable joy I can happily see that this truly may be the beginning of the final stage of my overcoming.

Theo St. Francis Help Hope Live smile

Theo pursues and relishes “moments of ecstatic, indescribable joy”


Last fall, Theo St. Francis presented his first workshop and co-wrote a textbook on Pilates for SCI with his trainer, Stephanie Behrendt, and they plan to expand the curriculum (zebrafishneuro.com for more). Theo has also found his home regimen to be vital in giving him space to explore, so he is developing an at-home protocol for individuals who have endured a spinal injury to understand their bodies in new ways. He absolutely intends to return to MIT when he feels his body is ready. Connect with him on his website, Facebook (fb.com/THEOvercoming1 or personal), and Instagram.

Voices of Hope: Someone Strong to Lead the Way

On her blog Struggling with Serendipity, Cindy Kolbe documents the journey she and her daughter, Beth, took after Beth sustained a spinal cord injury in May 2000 at age 14.


I drove back from my son’s college concert near midnight. Exhausted, I glanced at my 14-year-old daughter, Beth, asleep in the passenger seat. We were only 10 minutes from home. I thought I could make it without falling asleep. Then I heard a road sign flatten on concrete. As the car flipped three times across a bare Ohio field, we left behind an ordinary life.

I escaped with cuts, bruises and blood-matted hair. Beth was another story. The car was cut open to rush her to a helicopter that would take her to the nearest hospital. A doctor in Toledo told my husband, John, that she was paralyzed. When he broke the news to Beth, she paused only a moment before simply responding, “Let’s talk about what I can do.”


Later, when I arrived, Beth lay flat in a maze of tubes and wires, her pretty face swollen, her neck in a brace. She greeted me with a small smile. Her usual upbeat attitude was muted but present–I should have felt gratitude for that, but I didn’t. In disbelief, I stared at the girl in the bed. How could she smile?

When Beth slept, a surgeon guided me to a chair. He was kind, but his words were devastating. The bones in her neck were shattered. After surgery, he told me that her spinal cord was severed at the C6-7 vertebrae. With all four of her limbs damaged, she was now a quadriplegic who would never walk.

The loss of hand function seemed especially cruel. Her fingers didn’t work and her muscles began to shrink (atrophy). Among many health risks, pneumonia stood out as a leading cause of death for quads—along with suicide.


With one mistake, I had hurt everyone I loved.

Whenever I closed my eyes, I saw the upside-down car and Beth slumped over her stomach on the ceiling, her neck at a disturbing angle. The image haunted me. How easy it would be to lose myself under a blanket of guilt. Instead, I focused on small moments. Beth needed me. I turned her to the side, straightened a sheet, adjusted a pillow, and stayed in sight. Sleepy, in a morphine haze, she told me, “I like it when you hold my hand.” Crying quietly, I could not make myself grateful for the partial feeling in her hands.


When Beth was transferred to rehab, we shared a room with a girl in a crib with high sides who made sad sounds. She was alone with a brain injury. We met a man with a spinal cord injury who needed a ventilator to breathe; he moved only his head. A teenager with paraplegia refused to get out of bed and moved to a nursing home; he had full use of his hands and arms.

As physical therapy started, Beth lay face down on her stomach, unable to lift her shoulders off the mat. Her body was moved for her. She had no strength. The therapy session finished with the difficult process of transferring her into a wheelchair. Beth opened her arms and I leaned into a hug. Her bent hand softly patted my back. Suddenly, I was grateful for arms and wrists that move. For lungs that breathe. For her ability to feel me pat her back in return.


After a month in rehab, Beth tried to sit up on the mat. She started on her back and concentrated on throwing one arm over the other to roll onto one side. It took several tries. She pushed down with her hands to raise her upper body incrementally to a shaky sitting position for the first time. Her body tottered back and forth in a battle of balance–Bambi on ice. My instincts screamed to help her, support her. Instead, I turned away to wipe my eyes.

She leaned forward and planted a hand on each side to steady herself. She looked up and smiled when she heard me clapping with the therapists. Even Beth seemed surprised by, and glad for, every small thing.


My daughter insisted on starting her freshman year of high school on time about three months after her injury. On the first day, she pushed herself slowly down the halls in a manual wheelchair. Four years later, she was able to independently care for herself and live in a dorm or apartment with no assistance, a rare feat for quads.


Beth’s attitude propelled her forward with me in tow. Little by little, I chipped away at my millstone of guilt. Sometimes we need someone strong to lead the way.

Now, all I see is what she can do.


Cindy Kolbe is a lifelong disability advocate who lives in Summerville, South Carolina. She managed group homes in Ohio and ran a nonprofit in Massachusetts. Her daughter Beth graduated from Harvard and Stanford Law and is employed as a health policy lawyer in Washington, D.C. Access her Blog and reach her via email.

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What the Holiday Season Means to Me After a Spinal Cord Injury

In 2009, Kirk Williams was a motivated Colorado sociology graduate who filled his downtime with outdoor adventures and sports. In November of that year, a “complete freak accident, like trip-over-your-shoelaces kind of crash” changed his life: Kirk sustained a C5 spinal cord injury as he flew over the handlebars of his mountain bike. The injury left him paralyzed with a limited amount of feeling in his legs and limited use of his fingers.

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Kirk didn’t want his injury to put the brakes on his full and active lifestyle

As soon as he was able, Kirk began to immerse himself once again in outdoor adventures and sports. “My injury did influence my hobbies but I haven’t stopped doing what I love,” he explained. “I still do photography, camp, mountain bike [and] new hobbies like wheelchair rugby, scuba diving and hand cycling. I love travel and I was not reluctant at all to travel after my injury.”

Photo by SCI Recovery Project via Facebook.

Rehabilitation helped Kirk to reclaim his adventurous lifestyle, little by little. Source

Kirk is the founder, director and pilot/camera operator of the UAV-powered video production agency Birds Eye Optics. “It’s wild to think that while most people may think that since I’m in a wheelchair, my perspective is limited,” observed Kirk. “Actually, with my career, I see further than ever before.”

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“With my career, I see further than ever before.”

He credits fundraising and community support as essential parts of his journey. “My community of family and friends has been one of the most significant parts of me getting where I am today,” said Kirk. “Without the help of friends, family and HelpHOPELive, I wouldn’t have been able to afford the amazing equipment and lifestyle that I love to live. With my incredible support system, I’ve surpassed even my wildest dreams of what is possible.

I see each [injury] anniversary as a day to look back and see just how far I’ve progressed. I remind myself that anything is possible. I’ve taken the cards I’ve been dealt to not only survive but thrive in what first seemed nearly impossible circumstances.”

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On each injury anniversary, “I remind myself that anything is possible.”

Asked about the end of the year approaching, Kirk captured a sentiment shared by many of our clients, whether they are living with an injury or waiting for a transplant: the holidays are a time for hope, family and looking to the future. “The holidays are always a wonderful time of year,” explained Kirk. “I can catch up with friends and family and we can enjoy each other’s company. As crazy as they are, it’s always rewarding to have my entire family together in one place.”

The hustle and bustle of the season doesn’t appeal to Kirk, who said, “my favorite part of the holidays is being able to relax with the ones you love. It’s not about the busy times for me…it’s the downtime that I cherish the most. And the food!”

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What do the holidays mean to Kirk? Hope, family and looking to the future.

I usually make a New Year’s resolution,” said Kirk. “It’s a good chance for me to attack my goals with a refreshed set of eyes.”

His advice for others entering the holiday season and looking ahead to the new year? “Life is short, so why not try to experience it to the fullest? Get out there and try everything you can. You can be as happy or as upset about your injury and your life as you choose to be. It’s entirely up to you.

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Kirk says happiness after a spinal cord injury “is entirely up to you.”

What does hope mean to Kirk? “Hope means having my eyes set on what lays ahead, and knowing there is always a possibility for positivity given the right mindset.”

We know fundraising can make a significant impact on an individual’s life through the power of community, both financially and emotionally. As you continue to trust our nonprofit for a lifetime of medical fundraising support, we hope this holiday season brings you memorable times with friends and family and plenty of opportunities to look ahead, with hope.

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From our family to yours! Photo by Kirk.


Kirk Williams continues to fundraise with HelpHOPELive for the lifetime out-of-pocket medical and related expenses associated with his injury.

Bella Da Dawg is Kirk’s four-legged companion. She “spends most of her days dreaming of tennis balls” and “screwing up sound from her habitual snoring and striking good looks.”