Category Archives: Voices Of Hope

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.

Touched by Transplant: Healing Inside and Out After a Transplant

In December 2014, Linda Jara was fighting off what she thought was a seasonal flu. After several visits with her doctor, Linda was diagnosed with heart failure. Medication couldn’t correct the issue, and as her condition declined, she received a left ventricular assist device (LVAD) as a bridge to a lifesaving heart transplant. In 2016, she finally got “the call” she had been waiting for.


I went from living a normal life to being in end-stage (advanced) heart failure within a month. This is how I was Touched by Transplant.

Touched by Transplant 2017 Help Hope Live


The Wait…and the Call


I waited for a heart for 18 months, from March 2015 to September 2016. My daily routine with an LVAD during that time: wake up; unplug from the wall unit; plug into the battery unit; record my numbers; take my morning medications; have breakfast; work out; shower and change my bandages every other day or use wipes; get dressed; go to work; come home; relax; go to bed; plug into the wall unit.

Linda waited for a heart for 18 months

The best way to describe waiting for a heart transplant is being on call 24 hours a day, 7 days a week. There is a momentary pang of anxiety every time the phone rings. You have no idea when the call will come. However, it can’t stop you from living your life. It is best to still make plans and live for the moment. You have to trust the process and know that waiting is part of making sure you will receive the best possible heart for you.

Linda Jara Help Hope Live

Linda explains LVADs to friends and supporters on social media

I had two false-alarm calls prior to “the one.” When I realized that call was THE call, it was surreal. I knew the minute I answered the phone that this call was different. This time around, the process from the phone call to surgery was a blur that happened within four hours. My emotions were mixed: I was happy, excited, sad, laughing, crying–you name it. My parents and a few close friends stayed with me until surgery started. That helped with the pre-transplant “will I survive?” anxiety.


Healing, Inside and Out


I was in the hospital for 23 days post-transplant. What I learned? Open heart surgery hurts. After the procedure, it hurts to lay in bed, to stand up, to cough, sneeze–you name it. This pain also affected post-surgery physical therapy, which became difficult because of fluid build-up in my body. But it’s essential to get in as much physical therapy after surgery as possible to heal well. That being said, I never looked forward to the therapist arriving!

Linda Jara Help Hope Live

Linda shows off her post-transplant scar

The most significant physical changes have been scars and scar tissue. Being just 6 months out from transplant, I have yet to feel great. I still tire easily, and I have to work on building up my endurance. Fortunately, I was sick for a very short time before I got my transplant, so I can still do most of the things I could do before the transplant.

Physically, I am enjoying life without being tethered to an LVAD. Freedom! I am working on improving my upper body strength and endurance so I can do even more. Emotionally, however, post-transplant life can be isolating. I have a few transplant friends who I can rely on to help me through the bad days. Despite how empathetic friends try to be, no one except other heart transplant recipients can understand the emotional challenges. There is a deep level of symbolism attached to the heart.

Linda Jara Help Hope Live

Linda uses her Help Hope Live campaign page to keep supporters updated

One of the biggest misconceptions about having a transplant is that your body is exactly as it used to be after you receive the new organ. Qualifying for a heart transplant was great, but it still isn’t as great as having your native heart. A new heart induces a significant adjustment period. I discovered how friends and family react to a medical crisis firsthand, and I identified people who could be a continued source of support. It was great knowing that there are at least some constants when your life is turned completely upside-down.

Linda Jara Help Hope Live

Friends provide ongoing support with a custom hashtag


Finding Support


I have the opportunity to discuss my emotional challenges with a transplant psychologist. Between her, my heart transplant friends and other members of my community, I am managing the best I can. Some days are difficult, but I have survived 100 percent of my worst days! As Emile Coue said, “Every day, in every way, I’m getting better and better.”

Linda Jara Help Hope Live

“Despite your empathy, you will never understand.”

The best thing to do for a loved one waiting for a transplant is to be supportive and understanding. What we are experiencing is something that, despite your empathy, you will never understand. People need to be mindful and make an effort to read our moods, but that doesn’t mean they have to walk on eggshells around us. Claiming that your cold or backache is “the worst thing in the world” sounds callous to someone waiting for a lifesaving (heart) transplant, especially because a heart transplant is one of the most complicated procedures out there.


Maintaining a New Heart


The transplant was not a cure. I have other medical conditions now that are not as serious as heart failure but are still significant. I developed prednisone-induced diabetes from post-transplant medications, but that condition should improve as my prednisone level decreases.

Linda Jara Help Hope Live

A transplant requires lifelong maintenance

In terms of maintenance, I need to take anti-rejection medications for the rest of my life as well as multiple other medications and supplements. I take 45 pills per day. I check my weight, temperature and blood pressure twice every day, and I check my blood sugar four times every day. It is my responsibility to notify my team if I am feeling off, notice a 2-pound weight gain, have a temperature of 99.5 degrees or higher or a blood pressure reading higher than 150/90. I have monthly right heart catheterizations and biopsies to check for rejection.

Exercise and a healthy lifestyle are also important. I take yoga classes and attend cardiac rehabilitation. I will be joining a cardiac rehab gym when this period of rehab is over.

Linda Jara Help Hope Live

“I take yoga classes and attend cardiac rehabilitation”


The Financial Side of Transplantation


I continue to fundraise with Help Hope Live post-transplant. I am on disability and fundraising helps to offset my monthly (out-of-pocket) medical expenses. Funds raised also helped to cover some of my mortgage payments when I was not receiving any income. A transplant is for life, and there will always be costs attached to this new lifestyle.

Help Hope Live helped me to get my fundraising efforts off the ground. The staff members that I have been fortune enough to meet are warm and make you feel like family. I remember laying in the hospital when the idea of fundraising was first presented to me. I was given the numbers for the cost of a transplant before insurance. The meds alone were over $60k (per year). I believe it is important to continue to fundraise so I won’t have to worry if unforeseen medical expenses pop up in the future.

Linda Jara Help Hope Live

Linda has no plans to stop fundraising post-transplant


A Lifelong Advocate


As a heart transplant recipient, I think it’s important to encourage people to register as organ donors. It would be difficult for someone to find a reason NOT to agree to donate if they were in the position to directly impact the life of someone they knew personally. It’s also hard to explain your choice not to be an organ donor to a living recipient like me!

Touched by Transplant 2017 Help Hope LiveLinda fundraises for the Help Hope Live Mid-Atlantic Heart Transplant Fund. Follow her Blog for updates. Need help covering pre- or post-transplant expenses? Learn about starting a fundraising campaign with our nonprofit.

Feeling “Blessed,” Raising Thousands, and Finding Hope: Our Clients in the News

Just a few months into 2017, Help Hope Live clients are getting their stories featured in news outlets across the nation. Here are three standout stories of hope.


Rachelle Ledbetter: Community Responds to Rare Diagnosis with Resounding Strength


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In 1968, Rachelle Ledbetter was the first child to be diagnosed with allergic bronchopulmonary aspergillosis (ABPA), a chronic condition characterized by an exaggerated response of the immune system to the fungus Aspergillus. By adulthood, her hypersensitivity to environmental allergens had developed into a secondary infection that would necessitate a double lung transplant.

Rachelle is the former owner of the Sequoia Sentinel weekly newspaper. Out of respect for her editorial legacy, the Kawaeah Commonwealth, a more recent incarnation of the Sentinel, published in-depth coverage of Rachelle’s medical journey, her “upbeat and positive” outlook, and her plans for a community-driven Help Hope Live fundraiser.

We learned in March that the Spaghetti Feed raised a whopping $8,880 for the Help Hope Live Southwest Lung Transplant Fund in honor of Rachelle. “Apparently, the food ran out after serving 300 meals,” Rachelle wrote in an update on her Help Hope Live campaign page, “and yet you kept coming!” (Rachelle’s Lifetime ‘Journey to New Lungs’)


Michael Thor: Returning Home and Rekindling Hope After a Life-Changing Injury


Michael Thor Help Hope Live

Michael Thor with his wife and caregiver

In November 2015, Michael Thor was hit by a car while riding his motorcycle. He sustained a C2 spinal cord injury. At the time, he was in the process of pursuing one of his lifelong dreams: opening a restaurant with a good friend. The accident put Michael’s restaurant plans and the rest of his passions on hold as he and his family adjusted to his new life with quadriplegia.

After a year and a half of out-of-state intensive therapy, and just a few months after its grand opening, Michael was finally able to return home to see his restaurant in action. Tears filled his eyes as he witnessed how his business partner and staff members had come together to turn their shared vision into reality. “I could not be more proud,” said Michael.

A fundraiser held at Michael’s restaurant kicked off fundraising efforts for the Help Hope Live Southeast Spinal Cord Injury Fund to support ongoing rehabilitation. “I can tell that Mike has been rejuvenated,” wife and caregiver, Sarah, said in an update. “It was a really big morale boost for him to get back home. We were able to raise around $6,000. We truly can’t thank you enough.” (Restaurant Holds Fundraiser for Paralyzed Raleigh Chef)


Kimberly Grossman: Feeling “Blessed” as Faith Community Steps Up to Help


Kimberly Grossman Help Hope Live

Kimberly Grossman with her twins

Though she’s fighting chronic kidney disease, Kimberly Grossman considers herself blessed. Kimberly was diagnosed with end-stage renal disease in her twenties based on symptoms that had been following her around since she was just three months old. Kimberly’s strong connection to a faith-based community in her area provided the starting point for her fundraising campaign.

A spaghetti dinner fundraiser for the Help Hope Live South-Central Kidney Transplant Fund became an emotional lifeline as Kimberly met with friends and neighbors who showed that they cared about her. She and her 5-year-old twins are lifetime church members. “We wanted to do what Jesus tells us to do and help as much as we could,” explained Kimberly’s pastor.

Kimberly “fought back tears” as she reflected on her gratitude for community support. She advised others facing a transplant to “find as many ways as possible to fundraise. There are lots of people wanting to help.” (Spaghetti Dinner Fundraising for Woman in Need of Kidney Transplant)


Want your campaign to get featured in the news, too? Reach out to your Fundraising Coordinator today to receive media outreach support. 

Living with Kidney Disease, I Revel in the Joyous Expectancy of the Good to Come

Melissa Tuff was diagnosed with kidney disease at age 16. She began dialysis at 17 and waited nine years for a lifesaving kidney transplant. After more than 10 years with her new kidney, she is back on dialysis. She is fundraising with Help Hope Live while awaiting a second transplant. Melissa partners with multiple organizations to increase organ donor awareness, influence legislation regarding end-stage renal disease, and support fellow kidney disease fighters.

We asked Melissa about her transplant journey and the driving forces behind her advocacy work on behalf of kidney transplant candidates and other patients across the country.

Melissa Tuff Help Hope Live

Help Hope Live patient Melissa Tuff is an advocate and volunteer


Is transplantation an emotional process?


I was 16 when I faced my first transplant. I was thrown into dialysis and the transplant process with absolutely no idea what to expect. It was a very scary and traumatizing experience for me. Now facing a second transplant, I have had time to absorb everything and have learned a lot from going through the process before, so I know what to expect. All the information I have gathered over the years helps me to process my emotions in a healthy way and allows me not to feel as overwhelmed as I have in the past.

Melissa Tuff Help Hope Live

Melissa documents her physical and emotional journey online

Going into the transplant process for a second time evoked a variety of emotions for me. There is the fear and apprehension of potentially having to return to a life of dialysis if I do not find a living donor; the frustration that my body is slowly rejecting my kidney and there is nothing I can do about it; the gratitude for my donor who has given me nearly 11 wonderful years of life free from “the machine”; the feelings of disappointment that there may have been something I could do differently to prevent rejection; the aggravation associated with the length of the process to get listed; and the annoyance of dealing with the hoops I have to jump through, the delays and the costs incurred.


What gives you strength on the waiting list?


My family has not been involved in my fundraising or health care, so I have relied strongly on my chosen family at the Center for Spiritual Living in Cape Coral and my acquaintances on social media to provide support throughout my journey. I honestly do not know what I would do without them! Their words of support and the people who hold my continued health in their prayers give me the strength to keep fighting on days when I just want to give up.


How do you serve as an advocate and volunteer to support other kidney disease patients?


I volunteer at LifeLink of Florida setting up and sitting at organ donor registration booths at public events, hospitals and fairs. I am a Peer Mentor for the National Kidney Foundation, offering a confidential space in which dialysis patients, transplant recipients and chronic kidney disease warriors can share their experience and receive guidance. I’m a member of the Kidney Advocacy Committee and a Region 4 Leader, helping to influence policies regionally and with a yearly trip to Washington, D.C.

I am also the Secretary for the Organ Transplant Recipients of Southwest Florida support and advocacy group. With quite a full plate, I am still taking on more opportunities to advocate! I will begin volunteering with the American Association of Kidney Patients soon.

Melissa Tuff Help Hope Live

Melissa petitions for positive changes to renal disease legislation


How did you find Help Hope Live?


I began fundraising to help with some of my health care expenses after I was let go due to my declining health. In summer 2012, I was balancing a medical assistant job with a customer service position at a local grocery store. I was exhausted all the time, but had no choice but to keep going to make ends meet. Through exhaustion and hemoglobin issues, I became dependent on blood transfusions, requiring two units of blood every two weeks. I developed another condition which required me to wear an IV at home 12 hours per day to remove the excess iron from the transfusions.

While I tried my best not to miss work days as I balanced my health and my financial needs, and even signed out of the hospital at times against medical device to avoid missing a shift, I was told by my managers that “my health had become an issue.” I was devastated. I loved my job and it gave me a sense of accomplishment to help and care for other patients.

Melissa Tuff Help Hope Live

Daily life with kidney disease made it impossible to maintain full-time work

What could have been a tragedy or a failure became an opportunity for me: I was free to do the advocacy and support work that I would be most appreciated for, which would be far more rewarding than any paycheck.

I started using GoFundMe because it was what everyone seemed to be using. It was mildly successful. Then I met with the Tampa General Hospital Transplant Team and was told that I would need to raise nearly $13,000 before I would even be considered as a candidate for the kidney transplant waitlist. I knew I needed help, and that’s when I found out about Help Hope Live.

Finding Help Hope Live and working directly with a Fundraising Coordinator has been a godsend. I received more donations within the first few months of setting up a Help Hope Live campaign than I had in over a year of fundraising on my own with GoFundMe. The fact that Help Hope Live is an established and trusted nonprofit organization made working with them a no-brainer! The staff is extremely helpful, supportive and attentive when assisting with questions related to my campaign, which is not something you can say about crowdfunding sites.

Melissa Tuff Help Hope Live

Melissa “received more donations with Help Hope Live” than with GoFundMe


What are you currently fundraising for?


A lot of testing and medical clearances are required before getting approved for the transplant list. Because I only have Medicare coverage, I have to pay 20% of whatever the test or office visit costs plus the physician’s fee. My expenses add up very quickly and can be overwhelming, which is why I thank God for the ability to submit bills to Help Hope Live that I cannot pay myself.

Help Hope Live has alleviated some of my worries regarding paying for the transplant and health care leading up to surgery. Now I am working on keeping my only source of transportation running so I can get to all of my appointments and, eventually, to Tampa for transplant.


What do you think is one of the biggest misconceptions about transplantation?


People see both dialysis and transplantation as cures when really they are both forms of treatment. A transplant is not a cure for the underlying condition. This misconception may be due to the fact that many recipients go back to work, travel or start or grow families after transplant. Most of us appear to “go back to normal” after receiving a transplant. But people don’t see the post-transplant medication regimens, treatments, follow-up appointments, fear of illness and rejection, health and life insurance struggles and, of course, the medical bills, which never stop. That is why fundraising and long-term financial planning are necessary.


What is your advice for someone facing the kidney transplant waiting list?


Be aggressive regarding your health care. No one can be a better advocate for you than you. Do not be afraid to question your health care providers to make sure they are willing to work with you rather than making decisions for you. Do your own research and discuss your findings with your providers. I have personally changed providers when I have found that they were not providing me with the level of care that I deserve.

When it comes to our lives, we cannot afford to put our health in someone else’s hands without taking some responsibility ourselves. The best way to ensure that you receive quality care is to speak up. Just like the saying goes, “The squeaky wheel gets the grease.”

“Speak up,” Melissa tells transplant patients, and “do your own research”


Why is advocacy important in your life?


It is extremely positive for anyone living with an illness or life-altering injury to advocate for related causes and participate in awareness events. Not only is it educational and inspirational to those you share your experiences with, but it is also therapeutic and rewarding for you as you talk about your life with others. My volunteer work in this area is something that I look forward to and it makes me feel like there is a purpose behind my condition.

Now that I fall into the “underinsured” category myself as a patient, I realize just how unfair it is. People who need lifesaving transplants have enough to worry about without having to be concerned about how they will be able to afford to stay alive. In many cases, these people are not well enough to work full time to receive private health care coverage, but they are not sick enough to qualify for government benefits. We are the ones who are forever stuck in a cycle of medical debt and struggles to get the coverage we need for a better quality of life.

Melissa Tuff Help Hope Live

Participate in advocacy can help you to feel educated, inspired and rewarded


What does Hope mean to you?


Hope to me is more than just a word. It is a way of life. What comes to mind is, “Hold Onto Prayer Every Day” which is exactly how I keep my cheerful disposition despite what I may be going through at any time. I live with the joyous expectancy of the good to come. To me, that is what hope is all about.

I know it can be hard to remain positive when things appear to be going wrong. But we are still alive, still here to love and be loved. We are stronger than what has tried to take us down. Treatments and medical advances are being made daily, and we are very lucky for that. My favorite quote from St. Francis of Assisi helps me a lot when I am at a loss: “Start by doing what’s necessary. Then do what’s possible. Suddenly, you are doing the impossible.”


If you would like to learn more about Melissa or potentially become a living donor to change her life, find her on Facebook or at www.MelNeedsAKidney.com.

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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You Made Hope Happen in 2016

We know that when you donate to support our mission, you may not always see the direct impact of those dollars. And as a member of the Help Hope Live community, you may not realize how your efforts spark change and inspire action in others.

That’s why we’ve put together this post–to show friends like you how you make a positive difference, every single day, by being part of the Help Hope Live family. Your time and effort added up to some big numbers with huge impact in Fiscal Year 2016.

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Last year, you helped:


Launch 732 new medical fundraising campaigns

Provide $9.3 million to help cover vital medical and related expenses

Support the needs of 1,400 patients and families facing the most difficult challenge of their lives: a lifesaving transplant or a life-changing catastrophic injury or illness.

But you didn’t stop there…


You also helped:


Crush 4,942 medical fundraising goals

Plan 550 gatherings of hope nationwide

Inspire 2,451 words of gratitude

Provide 57 emergency assistance grants to help families avoid an immediate medical crisis

Honor 25 loved ones’ legacies, and

Joined a community of 3,224 empowered and compassionate friends and neighbors


Families across the country felt the tangible impact. 16 Help Hope Live patients reported finding a “new normal” after a devastating medical crisis altered their lives.

“Thanks to so many wonderful people, my family and I have reached our Help Hope Live goal for my double lung transplant recovery. We have no idea what the future will bring, but hopefully, I will continue getting stronger every day. I cherish breathing.”

Bob Wollenberg Help Hope Live

Bob Wollenberg, Great Lakes Lung Transplant Fund


10 patients reached a major independence milestone after a catastrophic injury, from going to college to driving and living independently.

“Alex’s physical therapy sessions are two hours and he enjoys every minute of it! He loves traveling wherever his [new] vehicle takes him.” He is pictured below with wife, Marina: “A new chapter is beginning for two deserving young people who have overcome so much.”

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Alex Paul, Northeast Spinal Cord Injury Fund


To us, these aren’t just numbers. They are symbols of hope in the midst of extremely challenging circumstances.

When you engage with Help Hope Live as a donor, patient, or volunteer, you are shouting hope from the rooftops. You are refusing to let a medical crisis dominate the course of a life. You are defying the negative noise the world throws at you by taking a stand for strong, loving communities and life-changing new beginnings. You are telling someone, “You matter. Your voice is heard. Your story is my story, too.

That’s what it really means to help hope live. Never stop: the world needs you, and so do we.


Keep hope alive in 2017!


Click here to make a one-time or recurring donation to our nonprofit to keep our mission strong in 2017 and beyond. And from all of us…thank you!

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.”