Tag Archives: Spinal Cord Injury

6 People Who Inspire Us With Courage, Strength and Selflessness

Our signature fundraising gala Live It Up! kicks off at 6 p.m. on Friday, September 23, 2016 with a VIP reception for our generous sponsors and this year’s Live It Up! Awardees. Doors for the main event open at 7 p.m. Get your tickets today!

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Each year we honor individuals who have impacted our organization and their communities with their bravery, selflessness and strength with our annual Help, HOPE and Live Awards.


This year’s Help Award goes to…The Zeldathon Team for excellence in fundraising.


In December 2015, a group of avid video game players and live streamers joined forces for a 150-hour “The Legend of Zelda” gaming marathon. Streaming their activities live, the gamers collected donations for HelpHOPELive throughout the course of the marathon. Gamers encouraged donations from viewers at home by initiating “donation trains” and incentives, turning watching gameplay into an interactive and collaborative philanthropic experience.

Zeldathon Hope raised over $250,000 for HelpHOPELive through the generosity of contributors in over 40 countries. The funds raised were used to meaningfully contribute to HelpHOPELive’s mission to support community-based fundraising support for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses and to provide one-time emergency assistance grants for families facing an immediate financial need due to a medical crisis.

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“We pursued HelpHOPELive because we wanted to work with a charity that could make a direct impact through donations,” explained Zeldathon executive director Matthew Moffit. “We’re creating something more than just a marathon – it’s a real community, dedicated to the forces of good.”

Moffit, Zeldathon assistant director Liz and spokesperson Brooke are among the dedicated gamers who devoted their personal time to planning, managing and streaming the nonstop gaming marathon. They hope to support HelpHOPELive’s mission again during a future Zeldathon.


The HOPE Award goes to…Maria Weaver-Hollowniczky and Elizabeth Casperite for living donation and organ donor awareness.


Liz Casperite was diagnosed with polycystic kidney disease in 2005. Her kidneys grew from fist-sized to football-sized. She joined the transplant waiting list in 2013, facing an average wait time of 4 or 5 years.

Liz and her family initiated a social media push to help Liz cut her wait short by finding a living kidney donor. Maria Weaver-Hollowniczky, a friend of a friend, saw Liz’s social media efforts and felt moved to step forward as a potential living donor.

Liz received the gift of life from Maria on September 17, 2015. Liz and Maria became inseparable during transplant preparations and have stood by each other ever since, partnering to share their story and lobby Congress in support of living donor protection legislation. They attended the 2016 Transplant Games in Cleveland, Ohio.

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Fundraising with HelpHOPELive will be an ongoing effort for Liz, who still faces post-transplant medical expenses from co-pays and travel for follow-up appointments to a lifetime of expensive antirejection medications. Liz must maintain Medicare A and B coverage until 2018 to financially protect Maria in case of post-transplant complications—something they hope to change for future living donors through their advocacy of the Living Donor Protection Act.


The Live Award goes to…John Michael LeMoine for inspiration after injury.


In July 2014, John Michael LeMoine was an Air Force airman enrolled in a firefighting technical school. On a day off, John was goofing around on the beach with his buddies. To avoid hitting a child playing on the beach, John jumped into the air to try to flip over him. He kept the child safe but shattered his cervical spine in the process.

It took six weeks of intensive therapy before John could wiggle his big toe.

John devoted himself to exercise-based therapy. Once insurance stopped covering his physical therapy, he turned to HelpHOPELive to fundraise for a lifetime of out-of-pocket medical and related expenses. In March 2015, John was able to stand independently for the first time since his injury.

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John and his mother, Lori, document his progress and his post-injury adventures, including skydiving, off-roading and adaptive sports with support from the Air Force Wounded Warrior program. “He can now make a sandwich,” Lori wrote in February 2016. “It seems so simple, but this was an impossible task before. These small achievements give him his independence back.” John embodies what it takes to build an engaged, motivated and multi-faceted new life after injury.


This year’s awardees will be honored at Valley Forge Military Academy’s Mellon Hall on September 23 from 7 to 11 p.m. among HelpHOPELive’s generous local supporters, board, staff and friends. Join us to celebrate the incredible milestones clients, volunteers and donors achieved in 2016!

New Video: Fundraising Changed My Life After A Spinal Cord Injury

In 2007, Jeff Harris was enjoying July 4 on the beach with friends when the unthinkable happened. “We were kicking a soccer ball around on the beach and my buddy kicked the ball in the water,” explained Jeff. As he dove into the water, “I hit right around the top of my head at the right angle, at the right speed, at the right tilt of the universe.”

Jeff broke his neck and became a C6 quadriplegic.

After they dealt with the initial shock and emotional trauma of Jeff’s injury, his family quickly began to realize how expensive life with paralysis would be. “It’s almost hopeless to get insurance companies to provide what these spinal cord injury patients need to have a great life,” said Jeff’s mom, Jan.

Jeff was facing extreme out-of-pocket expenses and co-pays. “Wheelchairs cost tens of thousands of dollars,” said Jeff, and that’s not to mention “medical bills and daily supplies” he would need for the rest of his life. Fundraising with HelpHOPELive changed Jeff’s life. “HelpHOPELive was a life ring for us,” said Jeff’s dad, Steve. “They know what works and they are able to give advice to folks like us who have never done this sort of thing before.”

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With support from their community, Jeff and his family planned an annual fundraiser that incorporated curling, one of Jeff’s biggest passions before his injury. The Curl-a-thon in honor of Jeff will soon enter its tenth year. “For these two days when we hold the Curl-a-thon, I am so humbled,” said dad Steve. “Everyone in Jeff’s sphere was just looking for a way to help him.

We’re proud to present our newest HelpHOPELive video featuring Jeff’s fundraising story. Tell us what you think by Tweeting @HelpHOPELiveOrg!

Jeff Harris HelpHOPELive Curl-a-Thon

Fundraising has helped Jeff to pursue independence and mobility

5 Unforgettable Facts About Diving And Spinal Cord Injuries

“The only safe dive is the one you never take,” claimed an infographic from Shepherd Center. Is it true that diving puts you at risk? How serious is the connection between diving and spinal cord injuries?

July is the number one month for diving injuries by a wide margin. Here are 5 facts you need to know to keep yourself and your loved ones safe.


Fact 1: Diving is the fourth leading cause of paralyzing spinal cord injuries.


According to Shepherd Center, diving makes the list of the top five causes of spinal cord injuries with paralysis. 89% of individuals who get hurt diving are male and 11% are female. Most individuals who are injured are between 20 and 29 years old.

Shepherd Hospital SCI Dive Accidents Poster


Fact 2: There are multiple ways to sustain an injury while diving.


There are multiple ways for a dive to end in injury or paralysis based on the location and structure of the spinal cord. The severity of disability depends on the level of the spinal cord where the damage occurs.

The vertebrae of the spine, separated by intervertebral fibrous discs, protects the nervous system’s spinal cord. It is possible to damage the spinal cord by injuring the vertebrae and discs or by injuring the spinal cord itself. “Severe damage to the cord and nerves emerging from the vertebral column will cause paralysis,” reported WHO.

Neck Injury Under Wave rotational Neck Injury Under Wave Verticle Compression & Hyperflexion

A user forum on Apparelyzed highlighted some of the many ways that diving can lead to a life-altering injury:

“My husband dove into a pool on Labor Day weekend. He is a C4.”

“My spouse dove into a sponge pit. He is now a C5/6.”

“[To me] dives must include anything headfirst, whether it be into lakes, swimming pools, the sea, trampolines or bouncy castles.”

“I made a conscious though foolish decision to launch myself from my patio roof into an above ground pool ten feet away. It was a calculated risk that turned ugly. C5/6 anterior incomplete, with all the bells and whistles.”

“I dove into a surfboard. C7 complete.”

Dumped on the seabed by a huge wave…C4/5 complete.”

“When you swim competitively, you dive into the pool at the shallow end from a racing block. I was goofing around and dove too deep and hit the bottom.”

“I dove off a 70-foot-high cliff and was fine. Then I dove into a shallow area (of water) from about 6 to 7 feet and hit the sand on the bottom, fracturing my spine at C5/6.”


Fact 3: Water can be deceptive, even if you are a good judge of depth.


Many individuals who sustained a spinal cord injury from diving echo the same lament: “I thought I had good perception skills. I thought I could trust myself to stay safe.” The truth is that water often appears to be deeper than it is, which can lead to devastating errors of judgment even for experienced swimmers and divers.

HelpHOPELive diving safety

Even experienced swimmers can misjudge depth

“The physics of what happens is unforgiving, as a diver can enter the water at 15 feet per second. Most of these accidents occur in water that is less than 3 feet deep,” explained Dr. Robert Bohinski in a PSA from Mayfield Clinic. “These accidents [are] completely preventable.


Fact 4: A single dive can alter your life forever.  


In 2014, Dillon Connolly was swimming with friends when he performed a simple dive from one area of the water to another. Storms had created a sandbar beneath the water, and the impact shattered Dillon’s C5-C7 vertebrae. What followed was “the longest year of Dillon’s life,” explained girlfriend Kerry Sheridan. “Immediate surgery, nearly a month of intensive care, three months of intensive physical therapy, occupational therapy, speech therapy, and lifestyle adaptations.”

Dillon Connolly HelpHOPELive

Dillon shattered his C5-C7 vertebrae while diving

Dillon explained that being an experienced swimmer isn’t enough to protect you from a dive that can severely alter the rest of your life. “I swam my entire life competitively,” he explained. “It even paid for college. I broke my neck diving into a wave where the sandy bottom went from deep to too shallow. I tell everyone I meet who asks what happened to never dive unless you can see the bottom, and to tell their kids and friends, too.”

Dillon Connolly HelpHOPELive

Dillon with his girlfriend, Kerry, and dog, Reef


Cole Sydnor was 16 when a diving accident left him paralyzed from the chest down. “The average person may not understand the extent to which our injuries affect us ‘behind the scenes,” Cole explained in an interview. “Most people…are never exposed to what it takes for [us] to shower, dress, use the restroom, etc. Those are the hardest parts about living with a spinal cord injury.”

Cole Sydnor HelpHOPELive

Cole was 16 when he became paralyzed from the chest down

To add to the physical and emotional challenges, spinal cord injuries can come along with a host of pricey out-of-pocket expenses. “Any medical expenses deemed unnecessary by insurance fall on my family and it becomes their responsibility to make those purchases,” Cole explained. “My elevator, room and bathroom renovation, and truck were all expenses that our community rallied to help fund.”

Cole Sydnor HelpHOPELive

Cole’s community “rallied to help fund” his out-of-pocket needs

Today, Cole and his family are vocal advocates for swimming and diving safety with the No What UR Divin’ N2 campaign. “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,” Cole said.

Cole Sydnor HelpHOPELive

Cole and his family are now diving safety advocates


Jeff Granger Harris broke his neck diving into the ocean in 2007. “He ran in to jump over a wave like me and him had done 20,000 times,” explained Jeff’s brother, Greg. Jeff hit his head “at the right angle, at the right speed, at the right tilt of the universe” and became paralyzed. “Anything you’re used to doing, you can’t do anymore in Jeff’s situation,” noted Greg.

Jeff Harris HelpHOPELive

Fundraising helps Jeff expand his mobility options

Jeff will face lifelong physical and financial challenges because of a split-second dive. “This is the only life that I have and I’m going to make the best of it. HelpHOPELive allows you some of that ability through fundraising,” he said. Fundraising has helped Jeff to bridge the gap between what insurance will cover and what he needs for a fulfilling and engaging life.

Jeff’s incredible story will be highlighted in an upcoming video from HelpHOPELive. Subscribe to our YouTube channel today and be among the first of our followers to see it!

Jeff Harris HelpHOPELive

A new video tells Jeff’s story


Lauren Shevchek had been swimming competitively for over a decade. At age 19, she dove into a pool and fractured three cervical vertebrae. She lost feeling from her chest downward.

Lauren Shevchek HelpHOPELive

Lauren was a competitive swimmer before her diving injury

Lauren worked through months of inpatient rehabilitation to regain some of her independence. She is beginning to recover some feeling beneath her injury site, though she mostly only experiences those sensations as pain. As her mother, Janice, explained, “We have learned to celebrate any sensation, including pain, as a sign that things are reconnecting.”

Lauren and her family speak publicly about the dangers of diving in order to reduce the number of diving-related injuries. Janice explained why she is a vocal advocate for diving safety. “Teens in particular are shocked when I mention that paralysis is not just about walking. It’s about losing your ability to urinate and move your bowels on your own,” Janice said. “Once they begin to understand, they will never forget how devastating the injury is.”

Lauren Shevchek HelpHOPELive

Lauren speaks publicly about the dangers of diving even as an experienced swimmer


Fact 5: You can make a difference.


You have a responsibility to keep yourself and your loved ones safe from preventable diving-related spinal cord injuries. Here are a few things you can do right now:

  1. Educate yourself about safe behaviors and share what you learn with your loved ones.
  2. Always swim with a lifeguard.
  3. Enter water feet first, even if you do not plan to dive.
  4. Don’t dive at all to maximize your chances of preventing injury and paralysis.
  5. Take the Feet First Pledge! Save and share the graphic below or share it via Facebook or Twitter.

HelpHOPELive

“Have the conversations,” urged Janice Shevchek. “Share Lauren’s slogan with kids: ‘If you can’t see through it, don’t dive into it.‘ Never dive headfirst into water you can’t see through, no matter how experienced you are. And don’t ever act on a dare or try risky stunts. The consequences just aren’t worth it.

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: “You Are Always Stronger Than You Think You Are”

Just a few days before her final college exams, Morgan Ott fell through scaffolding and became paralyzed from the chest down with limited right hand function. Twenty-two year-old Morgan explains how life has changed since the injury and how mobility impacts her daily life.

Morgan Ott HelpHOPELive

Morgan fundraises for mobility essentials


How much did you know about spinal cord injury before you were injured?


Before my injury, I knew little to nothing about spinal cord injury. I have learned a tremendous amount since. When my injury happened, my close friends and family members researched spinal cord injury, the healing process and how my day-to-day life would be affected. I am learning new things every day.

Morgan Ott HelpHOPELive

Morgan says she “is learning new things every day”


How did your community respond to your injury?


My family has been by my side from the moment I was in the emergency room. In the beginning, they took me to all of my doctors’ appointments and therapy sessions. Now, they are still always there when I need someone to talk to or if I need any help. Coworkers, friends and the community also reached out to show me their support.

Morgan Ott HelpHOPELive

Friends and family have supported Morgan throughout her journey

My friends came to visit me in the hospital often, and one of my sorority sisters set me up with my first fundraising page with a goal of $5,000 on a crowdfunding platform. I switched from a crowdfunding site to HelpHOPELive because I had heard great things about the organization, and how it was easier to continuously raise funds for lifetime expenses with support from HelpHOPELive. Fundraising with HelpHOPELive allows me to request the funds when I need them instead of having to wait until I reach a set goal amount.


Will fundraising influence your mobility options?


Yes! I am currently fundraising for a Galileo tilt table, therapy at Project Walk, a standing frame, an FES system to help my circulation and keep my muscles active, and a Smartdrive power assist device to help me get around more easily by myself.


Have you experienced a range of different emotions since you were injured?


I think I have experienced probably every emotion possible, from extreme happiness to feeling very depressed. I often find that when I am the happiest, I think more about how much better my situation would be if I could just get up and walk again, and then I get very sad. It’s like extreme happiness comes with a price. Most days, though, I am very content and just happy to be where I am.


What do you think is the most common misconception about life in a wheelchair?


A lot of people assume that since I am in a wheelchair I need help with every daily activity or that I can’t live on my own or provide for myself. Most people are also surprised when they find out that I drive (with the use of hand controls).

Morgan Ott HelpHOPELive

“A lot of people assume…I need help with every daily activity”


What advice would you give to someone else living with a spinal cord injury?


You are always stronger than you think you are. No matter what obstacles life gives you, there are ways to get past them and continue living a healthy life. In terms of working with HelpHOPELive and covering your expenses, it’s never too late to fundraise, but the sooner the better.


Do you still strive to maintain an active lifestyle?


I recently moved down to southern California with my best friend. I am pursuing physical therapy twice a week for two hours per session, and I am finishing school with Arizona State University online. I am planning to get a job within the next couple of weeks to help me keep busy and make money. I also started attending a wheelchair dance class in which there are many other women around my age in chairs learning and performing routines.

Morgan Ott HelpHOPELive

Morgan attends a chair-inclusive dance class


What are your biggest mobility priorities at the moment?


I am focused on staying active with my physical therapies. My goal for physical therapy is to work on core strength and balance and gain back any amount of function, no matter how small.


Where would you like to be in five or 10 years?


In five years, I will have graduated from college and hopefully have a steady job that I enjoy. I can see myself in a steady relationship, establishing a life for myself, having done some traveling in Europe and Asia. In 10 years, I would like to have a successful career and a family.


In your video, you say, “We were going to make it through” after the accident. Do you still feel that way?


More so now than when I was in the hospital, I feel like I’m going to make it through. Keeping a positive attitude definitely helps me carry out day-to-day activities with more confidence and happiness.

Morgan Ott HelpHOPELive

“Keeping a positive attitude definitely helps me,” says Morgan


Unlock new mobility possibilities for yourself or someone you love. Start a fundraising campaign with HelpHOPELive at helphopelive.org. Mobility matters!

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.

Voices of Hope: Celebrating Black History Month

February is Black History Month, an opportunity to delve into the unique challenges and triumphs experienced by African-Americans. Here are two client perspectives on coping with discrimination, holding onto hope and serving as a self-advocate for your health.


David A. Jeffers

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David (above, with his wife Yasmine and sons) became paralyzed while at the beach with his family in August 2011. His family began fundraising with HelpHOPELive a month later.


Have you personally experienced or witnessed discrimination?

I’ve experienced discrimination both as a result of being black and as a result of being disabled. I have been treated as uneducated and unintelligent. People often choose to talk to my wife instead of me and ignore me, even when I address them directly. Little do they know that the black guy in the wheelchair is an active father, husband and mechanical engineer who graduated with the third highest GPA in my major.


How have you served as your own advocate?

Honestly, I’ve had to fight for almost every service I’ve used and the assistance I’ve received, including public transportation, rehabilitation and making sure neighborhood amenities are accessible. I document my experiences on my blog. I would advise others who face a similar struggle not to take ‘No’ for an answer. You must be persistent. For several issues I encountered, it took months to find a resolution.


What does Black History Month mean to you?

I wish we didn’t need to have Black History Month. I wish the history books and school curriculums could reflect events as they happened with a reverence for all cultures, but until that happens, it will remain an important month to me and my family.


What do you associate with the word ‘hope’?

A catastrophic injury like mine is truly life-changing. I could have died. As a quad, your whole approach to life has to change. You gain a totally new perspective on life. Hope gives me the ability to survive and thrive. Without hope, me and my family would not be as healthy or happy as we are today. My wife and kids are my main motivation and they help me find hope.


David is currently fundraising for Lokomat training ($85 per hour) and exercise therapy ($35 per hour) to improve his mobility. He has noticed a drop in strength and energy level since he stopped therapy in June of 2015 due to financial constraints.


Alison Jones

Alison Jones and son Alerique Dariso

Alison (above, with son Alerique Dariso) was diagnosed with polycystic kidney disease (PKD) when she was seventeen. She is seeking a living kidney donor so she can receive a life-changing transplant. Alison and her son started fundraising with HelpHOPELive in June 2015.


Have you personally experienced or witnessed discrimination?

I have had to seek numerous medical opinions to get treatment. Organ transplantation was never included in potential treatment options as my kidney function declined. I had to initiate the conversation myself. After speaking with other African-Americans, the majority knew people who were on dialysis or had died on dialysis, but only a small percentage knew someone who had received a transplant. In comparison, when I speak with non-minorities, I often hear, “A friend of mine had a kidney transplant. You are going to be just fine.”

The most painful racism I have experienced: one Valentine’s Day while my son was enrolled in a private preschool, he drew a picture of his “valentine,” who had blonde hair. His teacher pulled him aside and told him he couldn’t have a blonde valentine. That incident shaped my parenting and I began to prepare my son for discrimination and teach him that no one can limit his choices in life.


Any advice for other people who are facing the challenges of PKD?

For anyone living with chronic kidney disease or PKD, I strongly suggest participating in a support group. My greatest life strategies have evolved during support group meetings. Speaking with others who are experiencing similar health experiences is therapeutic and helps you to avoid depression.


What does Black History Month mean to you?

Black History Month is a reminder that generations of people have overcome insurmountable obstacles through diligence and continuous effort. Black History Month reminds me that giving up is not an option.

African-Americans make up a minority within the general population, yet we face higher rates of hypertension, heart disease, diabetes and obesity. All of these conditions can lead to kidney failure. One of the reasons I am looking forward to receiving a kidney transplant is so I can teach and advocate for early kidney function testing and proactive health behaviors to change current health trends.


What do you associate with the word ‘hope’?

I am so thankful to all of my loved ones who have supported me during this journey. To me, hope is another day of breath and opportunity. Every time God gives me another breath, I want to make it count, and that is living hope. After my life, hope will be there for more generations to strive to reach their highest level of potential and opportunity.


Alison is fundraising for uncovered costs associated with her kidney transplant preparations, including the cost of a lifetime of post-transplant anti-rejection medications.