Tag Archives: mobility

May is National Mobility Awareness Month!

Why #MobilityMatters

When you hear the word mobility, what comes to mind?

If you live with a catastrophic injury or illness that impedes your ability to move freely, you already know that mobility is more than just a concept. It’s a word that is closely tied to some of life’s biggest milestones and pursuits.

Chris Arbini Help Hope Live

Living with an injury or illness, mobility can change your life

Each May, we celebrate why #MobilityMatters to thousands of Help Hope Live patients, their families, caregivers, and medical professionals.

When we talk about mobility, we’re referring to far more than walking, reaching, and running. Mobility is a broad term for activities, therapies, and technologies that can add meaning and independence to our lives after injury or illness . Here are some examples.


Mobility is…


wheelchairs and power chairs that are must-have sources of mobility support.

physical therapy or exercise-based rehabilitation that increases or helps you to retain your balance, range of motion, and strength.

home renovations that make it possible to live and move comfortably in your own house.

accessible transportation that puts careers, college, social events, and medical travel within reach.

medications and ongoing medical care that safeguard or increase your motion.


Why #MobilityMatters to Me


Paul Mustol Help Hope Live

Paul participates in physical therapy

“Spring is here and we are taking one day at a time with Paul. The steroids have really helped him maintain his abilities, for which we are thankful. Physical therapy sessions in a pool provide good, low-impact exercise for his muscles and lungs.

Paul’s neurologist is recommending a motorized wheelchair with good back support that would be custom-fitted for Paul. A scooter would allow him to be more flexible and it would be easier to transport. We will take time to consider the choices.”

Paul Mustol, South-Central Catastrophic Illness Fund

Living with the genetic disorder Duchenne muscular dystrophy


Molei Wright Help Hope Live

Molei can regain mobility through therapy

“Molei has been through a lot and survived it all – a near fatal accident, a three-month coma, five months in the hospital, and uncountable setbacks along the way. Her insurance stopped covering her care about four months ago. Now, she is unable to participate in speech, occupational and physical therapy. She can learn to walk, speak, and eat well again, but only with the help of professional therapists.”

Molei Wright, Midwest/West Traumatic Brain Injury Fund

Traumatic brain injury in January 2016


Chris Arbini Help Hope Live

Chris is dedicated to physical therapy and regular exercise

“Chris has been able to go to Craig Rehab for some physical therapy, as well as workouts in their gym. The exercise has been great not only for his body, but for his morale as well.

Chris started a three-month program at Craig Rehab called NeuroRecovery Network (or NRN) which is a program developed by the Christopher Reeve Foundation. In the actual program, they connect him to electrical stimulation while training him to perform various functions. While I was there, they were working on retraining his hands to grasp.

Something that he plans on offsetting through fundraising is an FES bike, which sends electrical currents to the legs as it spins to promote circulation and provide nerve stimulation. He has been using it for 45 minutes to an hour each day, but since his access to outpatient care will ultimately be limited by insurance, having an FES bike at home will help him tremendously. This bike is close to $20,000 out-of-pocket.”

Chris Arbini, Midwest/West Spinal Cord Injury Fund

Spinal cord injury in July 2016


Scarlett Chandler Help Hope Live

Greater mobility means more independence for Scarlett

A van would make everyday tasks much easier. My mom had surgery before I started fundraising, and she was on her back for weeks and unable to drive. It would have made such a difference if I could hop in a van and pick up groceries and prescriptions. I want to be able to provide that for my family.

A van would also help me to attend college classes to I can secure employment. I fundraise to offset the cost of the van as well as specialized adaptive driving classes.”

Scarlett Chandler, Southeast Catastrophic Illness Fund

Living with the spinal cord defect spina bifida


Even With Insurance, Mobility Isn’t Free


Mobility-related expenses can become financially devastating to families. In fact:

  • Major home modifications for mobility can easily exceed $100,000 out-of-pocket.
  • An adapted vehicle could cost you over $50,000.
  • Physical therapy may not be covered by insurance at all, leaving you with an out-of-pocket price tag of $20,000 or more annually.

Tell Us Why #MobilityMatters!


We feature your stories and insights on our Blog every year during Mobility Awareness Month. Send your #MobilityMatters stories, pics, or videos to us at [email protected] and you could be featured in an upcoming post. You can take part as a Help Hope Live patient, family member, caregiver, spouse, friend, or medical professional.

How I Cope with My Wife’s Stroke and My Son’s Spinal Cord Injury

At age 27, Sean McGonagle was attacked in a shocking act of violence at a bar just two days before Christmas. Shot in the leg and chest, Sean became paralyzed from the chest down. Two years after injury, Sean underwent surgery to remove an abscess on his spinal cord where the bullet had been lodged.

Just four days after his surgery, his mother, Kass, had a stroke that left her with limited mobility and communication skills. Sean and Kass stayed in the same hospital during recovery and pursued rehabilitation at Magee together.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Kass and Sean stayed in the same hospital during their recovery.

Father and husband Dennis McGonagle helped to initiate fundraising campaigns with HelpHOPELive to support both Sean and Kass. Dennis explains how his family is living with the lifelong impact of spinal cord injury and stroke.


How is your relationship with your family? 


My relationship with my family is very strong. I retired early so I could be a caregiver for my wife and son, and I have three daughters and three grandchildren that I spend time with. It is very important to all of us to stay close and help each other.

Kass McGonagle Sean McGonagle HelpHOPELive

Dennis, center, retired so he could care for his wife, left, and son.


Why is fundraising important to you?  


Managing health is a minute-to-minute task. We have therapy three times a week, doctors’ appointments and daily care and companionship needs. As a quadriplegic, Sean suffers from a lot of pain and discomfort. Things will not get easier for him as time goes on; as a matter of fact, they will get progressively worse.

Kass McGonagle Sean McGonagle HelpHOPELive

Sean with Joanne from Magee Rehabilitation Hospital

He tries to keep a positive attitude and holds onto the thought that there may be some life-changing medical advancements in his future.

Kass McGonagle Sean McGonagle HelpHOPELive Magee Rehab physical therapy spinal cord injury

Therapy helps Sean cut down on “pain and discomfort” after injury.

For Sean, our last fundraiser was to help him purchase a new wheelchair. We have a long way to go, but the new chair will enable him to stand upright and increase his blood flow. In the long run, it will keep him from getting pressure sores and improve his overall health.

Sean McGonagle fundraising HelpHOPELive comedy hypnosis

Sean fundraises for a new wheelchair and other post-injury costs.

It has been almost three years since Kass’ stroke, and she is dealing with memory loss, speech problems and paralysis on her left side. She is reliant on a wheelchair for mobility support. Kass needs a stair lift to get up and down the staircase safely. We also need to make some modifications to her bathroom to make it safer and more accessible.

Kass McGonagle HelpHOPELive stroke

Kass fundraises with HelpHOPELive for home modifications, mobility needs and more.


How do you feel about fundraising with HelpHOPELive?


We have been in contact with the nonprofit since 2011. HelpHOPELive is a great nonprofit organization. From digital guidance and customized flyers to general understanding, HelpHOPELive has shown us the path to achieve our fundraising goals. We are also glad to have an avenue to allow our community to understand and support our fundraising goals and events.

Wheelchair van Sean McGonagle

“Picking up my new van! This never would have happened without your donations!”


Is it challenging to support a loved one as a caregiver while being a father?


Being a father and a caregiver is always a challenge, and in my case, I am helping to support both my wife and my son. They have similar needs and yet a lot of different individual needs as well. You can’t be in two places at one time, but somehow we have managed so far. Who better than a husband and father to take care of them? The best part about being a dad is the love of your children. A child is a gift and you get an opportunity to watch kids grow into young adults. My children are also my friends, which is very important to a healthy and honest family relationship.

Kass McGonagle Sean McGonagle HelpHOPELive spinal cord injury stroke boat Spirit Philadelphia

Dennis says his family “is more important than any material things.”

Remember that your family is more important than any material things. Remember to always look after and cherish your children. You never know when they will need you the most.


Learn more about Dennis, Kass and Sean at helphopelive.org. Do you know a family struggling to cover the out-of-pocket expenses associated with a catastrophic injury or illness? Learn how we can help with a tax-deductible fundraising campaign and one-on-one support.

From Isolated To Independent: Celebrating National Assisted Living Week

Now in its 21st year, National Assisted Living Week celebrates the lives and achievements of individuals with disabilities, long-term illnesses and injuries. In observance of this year’s theme, “Keep Connected,” we are taking the time to recognize the many ways that technology can be used to increase opportunity and facilitate better care and communication.

National Assisted Living Week 2016

This year’s theme is, “Keep Connected” 

For as long as humans have walked the earth, we’ve sought to simplify and improve our lives with the use of technology.

From the earliest stone tools to the first personal computers, our inventions serve as a means to enhance our natural abilities, helping to strengthen our relationships with others and refine our understanding of the world.


A Smarter, More Connected World


Technology has granted us the power to not only improve but extend and save lives. Medical advances have given us greater power to diagnose and treat illnesses than ever before, and now “smart” assistive tech promises to revolutionize the way people suffering from debilitating illness or catastrophic injury live their lives as well.

Fitbit Surge via pcmag.com

The “tech revolution” includes personal trackers like this Fitbit Surge – via pcmag.com

The Internet has long been a means of virtual connection, allowing users to communicate with one another whether across the street or across the world. Now, the Internet is increasingly used to connect us to the world itself. Smart devices – Internet-enabled objects powered by ever-smaller chips and sensors – have begun a revolution in which everything from watches to WiFi thermostats are able to share data with us and with each other. While the obvious appeal is often novelty or convenience, this shift also represents a powerful new way for people with a disability to live richer, more connected and more independent lives.

Vivint smart assistant

A “smart assistant” can help you control multiple features in your home – via vivint.com


Staying Connected


Each year, National Assisted Living Week encourages us to celebrate those who require assisted living and their caregivers, as well as to recognize the unique challenges they face. This year’s theme reminds us how vitally important it is for individuals with chronic diseases or disabilities to stay connected to friends, family and the world around them. Feelings of isolation and helplessness are common, and disability can erect seemingly insurmountable physical and social barriers. Fortunately, that may not be the case for much longer. Technology provides solutions that may allow disabled individuals to live more independent and interconnected lives, leading to improved quality of life and overall well-being.

Suria Nordin Kirby Nordin HelpHOPELive

Kirby repurposed existing tech to make life easier for his wife, our client Suria Nordin


Empowerment through Technology


The steady march of technology continues to remove obstacles that once isolated individuals with disabilities. Where the ability to operate a mouse and keyboard was once a necessity, voice recognition technology now provides easier access to phones, computers and other devices. Artificial intelligence, though still in its early stages, has already given us personal assistants that can handle many routine tasks that were once a source of struggle for many people. Home automation grants the power to remotely control and automatically adjust the local environment, from thermostat settings to interior lighting to door locks and other security features. Wearable technology opens new avenues not only for staying connected but for doctors and health workers to collect important information that may allow them to provide a higher level of personalized care.

Mikki Marshall control4

Mikki Marshall controls her home environment through technology for greater independence – via control4.com


Turning Disability into Ability


“Smart” technologies like home automation, service robotics and the Internet of Things are still in their infancy, but their potential impact is already being felt. The future has never looked brighter for individuals living with chronic illnesses, catastrophic injuries and other disabilities, as these technologies are poised to revolutionize the way they interact with the world, connect with friends and family and manage their health. Providing assistance that allows for more active endeavors and ability to enjoy many of the freedoms others take for granted, technology can provide tremendous support for people with disabilities and those who care for them.

robot assistant spectrumieee.org

Robot assistants could revolutionize home health care and senior care – via spectrum.ieee.org

Mobile technologies may also lead to improved health care and lower medical costs by providing more high-quality data, assisting in the diagnosis and management of health conditions, helping to prevent accidents and keeping patients actively involved and invested in their care.

Vivint text alerts

Integrated assistive tech can eliminate anxieties and open new possibilities

Technology has always had a central role in shaping both the present and the future. As smart products and mobile computing devices become more sophisticated, they will continue transforming the ways in which we interact with both our surroundings and one another. The many obstacles that people with disabilities and debilitating illnesses face won’t disappear overnight, but by keeping – and staying – “connected,” the world is a more welcoming and accessible place for everyone.


This guest post was written and submitted by Beth K, a freelance writer specializing in home automation and technology topics. How will you celebrate National Assisted Living Week?

 

Mobility Matters: How To Get The Equipment You Need

If your family has been affected by a catastrophic injury or illness, it can be a challenge to cover the costs associated with mobility and quality of life. Fundraising can help you offset the out-of-pocket expenses that come with a disabling injury or illness so you and your family can have a brighter and more mobile future.


What Our Nonprofit Can Do For You


If you are coping with a spinal cord injury, traumatic brain injury, stroke or a catastrophic illness that affects mobility, we can help you rally your community to raise funds, providing tailored support from one of our expert Fundraising Coordinators. There’s a reason families choose HelpHOPELive over crowdfunding platforms. In addition to one-on-one guidance, HelpHOPELive offers other unique advantages:

  • Nonprofit Status (receive tax deductible donations and corporate and matching grants);
  • Online Donation Page;
  • Bill Pay Support and more.

Mobility expenses are costly. After a spinal cord injury, families may be responsible for $480,000 to $985,000 or more within the first year alone. Lifetime costs associated with an injury range from $500,000 to $3 million depending on severity. Here are just a few of the mobility-related expenses you may want to fundraise for:

  • Health insurance premiums, deductibles and co-pays
  • Medications
  • Travel expenses and temporary relocation costs for rehabilitation and treatment
  • Home medical equipment
  • Home modifications for accessibility
  • Home health care services and caregiving
  • Physical therapy and vocational rehabilitation
  • Experimental treatment

the cost of a spinal cord injury


For people who are living with a catastrophic illness or injury, challenges associated with uncovered medical expenses last a lifetime. HelpHOPELive is often able to help families over many months or years as they face long-term challenges with uncovered medical expenses.

Richard Travia Katie Travia HelpHOPELive

Don’t let expenses hold you back as your life moves forward

Many of our clients offset the cost of their ongoing mobility essentials through annual community events planned with our fundraising expertise. For example:

With an annual Curlathon entering its tenth year, Jeff Harris gives his community a tangible way to contribute to the expenses that allow him to remain independent, including home health care and accessible transportation.

A yearly spaghetti dinner fundraiser helps Aaron Teel continue the rehabilitation that will help him “play soccer, surf, golf, snowboard, skateboard” and improve his quality of life.

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Our Partnership With NMEDA


If your goal is to fundraise for an accessible vehicle, you may qualify for a campaign under our partnership with the National Mobility Equipment Dealers Association (NMEDA). As NMEDA CEO Dave Hubbard observed, “Sometimes, the barrier to an automotive mobility solution is a gap in funding.”

Mobility Awareness Month NMEDA

NMEDA established National Mobility Awareness Month (celebrated every May) as an opportunity to raise awareness about why mobility matters and encourage families to learn how they can secure the accessible transportation they need. Through our partnership, we hope to help families across the country experience greater freedom and mobility than ever before.


Voices Of Hope: Jacob Gets His Van


Joining forces with NMEDA is more than just a partnership on paper for our organization: just ask the family of Jacob Norwood. Jacob is a 12-year-old living with FOXG1 Syndrome, a rare genetic disorder that causes both physical and cognitive delays (Jacob is one of only 159 known cases of this disorder in the world). Non-mobile, non-verbal and legally blind, Jacob requires full-time care and an assortment of medical supplies to stay healthy.

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Jacob’s family entered the NMEDA Local Heroes competition to win an accessible van that would lift a considerable financial burden off their shoulders. When the contest ended without a win for the Norwoods, they decided to fundraise with HelpHOPELive to make their mobility dream a reality.

With community support and fundraising guidance, the Norwood family was able to raise more than $40,000 and cover the cost of an accessible 2015 Dodge Caravan to help transport Jacob into town, to the park and to medical appointments. As Jacob’s mother, Heather, explained to a local news station, “He is going to be able to have fun and we are going to be able to be a family [with the van]. I still shake my head in disbelief about what we have been able to accomplish and the support that we have.”


Get Started!


Need help covering the out-of-pocket costs associated with vital mobility expenses? Start a fundraising campaign with HelpHOPELive. We’re proud to provide nonprofit accountability and one-on-one fundraising support to help keep you mobile.

Mobility Matters: Community Support Can Open Doors After Injury

As Mobility Awareness Month continues, we hear from Cole Sydnor, who was 16 when a diving accident left him paralyzed from the chest down. Today, almost five years after the accident, loved ones describe him as a fierce competitor, a compassionate friend and a community member dedicated to giving back.

Cole Sydnor HelpHOPELive

Cole coaches the Richmond Sportable Spokes wheelchair basketball team


Are mobility and independence important to you?


Mobility and independence are important no matter who you are. For me specifically, they are of the utmost importance, because a spinal cord injury can prohibit one from enjoying them freely. It has taken great effort to recover some semblance of the mobility and independence I once had. Now that I have, mobility and independence are allowing me to successfully navigate college and even hold a full-time internship away from home.


How has physical therapy impacted your life?


Without physical therapy, not only would I have an incomplete understanding of what I am capable of, I wouldn’t even have built up the strength to reach that potential.


What financial challenges has your family faced since the injury?


Financially, expenses were centered on making everything accessible. That began with adding an elevator to my house and converting my room and bathroom so they would be completely accessible—all three projects were very expensive. We also had to purchase a truck which could accommodate a specific (wheelchair) lift so that I’d be able to drive.

Cole Sydnor HelpHOPELive

The financial strain on Cole’s family was “significant” after injury

To this day, any medical expenses deemed unnecessary by insurance fall on my family, and it becomes their responsibility to make those purchases out of pocket. Expenses add up quickly. One current expense is outpatient physical therapy. On top of paying for college, the financial strain has been significant.


How did your community support you after you were injured?


At the time, I was certain that my life had been irreparably changed for the worse. Motivating myself was not enough to get my butt in gear, so I relied on friends and family to help me find that motivation to work towards recovery. I was able to lean on my loved ones whose encouragement was neverending. Without that presence constantly pushing me forward, it’s likely that I’d still be swallowed by despair, doing nothing and helping no one.

Expenses which go uncovered by insurance can rack up quickly. My elevator, room and bathroom renovation, and truck were all expenses that our community rallied to help fund. Without my community, we would have had no shot at those things and more.

Cole Syndor HelpHOPELive

Friends and family were a big source of support


Can you describe how it felt to go to college away from home?


Well, I was very nervous and apprehensive about going away to college. What comforted me was the proximity of campus to my home and the fact that my brother was going to be living with me. Like when I was first injured, I really relied on the encouragement and support of my friends and loved ones to make the leap to living on campus.

In hindsight, I was over-worried. The transition was surprisingly smooth, largely due to the very accommodating services of University of Richmond. They put in hard paths where they may have only been an off-road path, moved classes to the most accessible buildings, and placed me in a spacious room centrally located on campus.


What do you think the average person doesn’t realize about spinal cord injuries?


The average person may not understand the extent to which our injuries affect us “behind the scenes.” Most people only encounter people with spinal cord injuries when they are out in public but are never exposed to what it takes for them to shower, dress, use the restroom, etc. Those are the hardest parts about living with a spinal cord injury and unless someone makes an effort to understand, he or she may never realize it.


What are you most proud of?


I’ve been able to raise awareness about spinal cord injuries and spread a message about the importance of diving safety to youth in my community and beyond. A mother told me a story of how her son jumped off a river dock and broke his leg, not realizing that the water was very shallow. She was angry with him, but then he told her, “Mom, I didn’t dive. I remembered Cole’s story.”

Cole Sydnor

Cole is proud of his diving safety advocacy work


What are you looking forward to this year?


First and foremost, I’m looking forward to helping out with a fundraising event which will benefit a foundation that offers private scholarships for varsity or collegiate athletes who have been injured or become chronically ill. Next, I would say graduating from college. After that, if I could land a stable job in my field of interest, I would be stoked.

Most of all though, I look forward to the day that there is a cure for spinal cord injuries. My life would be transformed in an instant, the same way it was on the day I was injured. To me, the word “hope” means that one day I’ll walk again.


Do you know someone who needs community support to live a mobile and independent life after injury? Learn more about fundraising for mobility essentials at helphopelive.org. Mobility matters!

Mobility Matters: The Surprising Benefits Of Good Balance

Balance guru Helena Esmonde is the most senior neurological therapist at Penn Therapy & Fitness in Radnor, Pa. As we explore why mobility matters in honor of Mobility Awareness Month, she explains how balance can significantly influence our quality of life.

Helena Esmonde HelpHOPELive

Senior neuro therapist Helena Esmonde


Tell us about yourself!


I am a senior therapist II, and I participate in mentoring, teaching and research in addition to quality clinical care. As a neurologic and vestibular (inner ear balance) specialist, my focus is to provide individualized rehabilitation using evidence-based practice to ensure the best possible function and quality of life for my patients.


Why is balance important?


Balance is essentially the ability to keep your center of mass over your base of support, which is your two feet. With a working balance system, we can stand safely, react effectively, avoid falling when engaging in a planned movement, and walk and move without stumbling or falling.

balance

Balance is the ability to keep your center of mass over your two feet

When our balance is impaired, we are more likely to fall and get injured. Falls are the most common cause of traumatic brain injuries. Having the best balance possible minimizes the risks for serious and potentially life-altering injuries.


Which conditions can influence our balance?


Our balance can be impaired because of weakness, age, a neurological disease or injury, vision issues or decreased cognition. However, falling should not be seen as a normal part of aging or something that is inevitable. I often tell my patients, “Your auto-pilot for keeping your balance is not as automatic as you get older,” and that’s why patients train with us and learn how to move more safely.

fall

Falling should not be seen as a “normal” part of aging


How can poor balance affect your mind as well as your body?


There are a few different ways that balance can be emotionally and mentally distressing. When a person’s balance is impaired for any reason, that person lives in constant fear of injury and therefore tends to self-limit their activity. This can mean that they avoid exercise because of a fear of tripping on an uneven patch of sidewalk. That person then loses the mental and emotional benefits of regular exercise as well as the physical benefits.

isolate

Poor balance can invoke a fear of social environments

A person with poor balance often also chooses to avoid positive social experiences due to a fear of falling. For example, someone may not visit a friend because the friend does not have a railing next to their staircase, or they may not attend a party because of the fear of losing balance if someone bumps into them accidentally. Poor balance can lead to social isolation as well as physical deconditioning or disability.


How can physical therapy improve balance?


There are numerous advanced physical therapy techniques for training better balance, some of which are tailored to people with specific conditions. The focus of all such physical therapy is to key in on an individual patient’s goals. I am currently training an individual with MS who wants to be able to walk, dance and move safely at her daughter’s wedding in a month. Like most people with MS, she gets fatigued easily and finds that the fatigue negatively affects her balance. Another patient is trying to progress from using a walker to using a cane safely to free a hand for opening doors, carrying items and shaking someone’s hand in greeting. I try to focus on the goals that will bring quality to each unique person’s situation, whatever it may be.

balance

Could better balance improve your day-to-day interactions?


Can physical therapy be expensive?


Physical therapy is not as expensive as some other options, such as surgery, to correct balance issues. However, if a patient has a major injury or illness (including trauma, a stroke or a spinal cord injury) he or she will likely require therapy and rehabilitation for a longer time, including inpatient rehabilitation and home care, before “graduating” to an outpatient therapy setting. The numbers can add up.

wedding

“It’s hard to put a price on dancing at your daughter’s wedding”

Our main goal is helping patients get back to the highest level of functioning. It’s hard to put a price on dancing at your daughter’s wedding or shaking someone’s hand when you meet them. At Penn Therapy & Fitness, we offer a charitable care program for patients who are unable to afford their outpatient therapy. We also work with patients to help identify other resources that may help them afford care. This is one of the many reasons we appreciate partnerships with such wonderful organizations as HelpHOPELive!


Are there any ways to improve your balance at home?


Exercise is a critical element in decreasing your risk for balance issues and falls, but it’s important to understand what sort of exercise has the greatest benefit. Tai Chi, Pilates and yoga can improve balance, but for those who are not up for that level of challenge, strength in the hip muscles and core strength (belly and back muscle) are the most significant factors.

yoga

Try yoga to improve balance, or work on strengthening your body daily

Lie on your side and lift your top leg up and down. You’ll work important hip muscles that keep your pelvis stable for balance. In addition to exercise, have your vision checked at least yearly. Keep your mind sharp with crossword puzzles or other brain games that benefit your eyes and your brain! Taking action to prevent falls becomes more important as you age. Talk to your doctor and make sure you can keep your balance everywhere you want to go!


Need help covering the cost of rehabilitation to maintain your quality of life after a catastrophic injury or illness? Visit helphopelive.org to start a fundraising campaign with our nonprofit.

HelpHOPELive Clients In The News March 2016

Spring is a season of hope, renewal and rebirth. For these three clients, spring represents a chance to enjoy a healthier, happier future with help from community fundraising.


Scott Truran: Veteran Sets Sights On Treatment For Debilitating MS


Thirty-nine-year-old Scott Truran was diagnosed with a progressive form of multiple sclerosis in 2011. Before the diagnosis, the former Marine was very active and prioritized staying in shape. Today, he has to rely on a cane to walk and his right side feels like it’s been “dipped in concrete,” he explained.

Scott Truran HelpHOPELive veteran MS

Scott will continue to lose mobility as his MS progresses

Scott will continue to lose mobility as his MS progresses. It’s likely he will eventually need a wheelchair to get around. Scott and his family learned about a treatment option for MS that may help to limit Scott’s mobility losses. The treatment involves wiping out his immune system with low-dose chemotherapy, then using stem cells, previously harvested from his blood, to rebuild a new immune system. This treatment option is only available as a clinical trial in the United States. Scott and his family will need to raise $80,000 to receive the treatment in Mexico as well as additional funds to offset the out-of-pocket costs of travel and temporary relocation for Scott and a caregiver.

Scott Truran HelpHOPELive veteran MS

Scott is appealing to his community for support for his treatment goals

“The money is the biggest obstacle,” Scott explained, “but it’s a small price to pay for a chance to slow [the] disease or stop it entirely.” Scott will fundraise with HelpHOPELive to maximize his chances of securing the funds he needs to potentially halt or reverse the progression of his MS. (Veteran’s family asking for help with progressive form of multiple sclerosis)


Theo St. Francis: Young Man With Spinal Cord Injury Plans “His Comeback”


In 2013 while taking part in a pre-orientation at MIT, Theo broke his C6 vertebra in a diving accident. Theo became paralyzed from the chest down with some shoulder and arm movement and limited finger dexterity. Doctors told Theo he would likely never walk again.

Theo St. Francis HelpHOPELive

“I am done managing. I am overcoming.”

As the Sonoma Index-Tribune reported, Theo “set his brilliant mind toward devising a plan for his comeback.” In December 2015, Theo reached a major milestone when he was able to sit on a barstool during a celebration with friends. He tries to spend time away from his manual wheelchair, pursuing activities that “align with what my goals are,” from driving an adaptive car to biking, skiing, surfing, kayaking and traveling.

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Fundraising with HelpHOPELive is allowing Theo to pursue the intensive spinal cord injury therapies he credits with helping him improve his mobility over time. Theo emphasizes the word “recovery” and spends his days looking forward. “I put the impossible in quotes,” he explained. “I am done managing. I am overcoming.” (Theo St. Francis overcoming odds to regain mobility)


Michael Mahan: Community Supports Man Facing Intestine Transplant


In 2012, what Michael Mahan and his family believed to be an upset stomach turned out to be a dangerously twisted small intestine. Since doctors removed the failing organ, every 6-8 weeks, Michael ends up back in the hospital with septic blood. With no small intestine to help his body process food, the husband and father of three relies entirely on intravenous nutrition as he waits for an intestine transplant.

Michael’s priority today is raising funds to cover the out-of-pocket expenses associated with an intestine transplant and follow-up care. He may need to spend up to 10 months in a transplant center after the procedure, and the cost must be paid up front before he can be put on the transplant waiting list.

Michael Mahan HelpHOPELive

Michael is a husband and father of three

Fundraising with HelpHOPELive is helping Michael to secure the funds he needs to get the transplant, but it’s also connecting his family with their supportive community. “We’re just so excited to do everything we can to help him out,” said local resident Jon Rosenlund. “He is a wonderful man and a great father. It’s an honor to help him, but we need a lot of help.” (Fundraiser to benefit man awaiting intestinal transplant)


Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.