Live It Up! and Celebrate Hope with 3 Inspiring Stories

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

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

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


Help Award for excellence in mentorship: Bill Soloway


Heart Recipient and Peer Mentor “Spins” to Win


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

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

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


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


Father-Son Toy-Shop Owners Triumph with Transplantation


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

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

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


Live Award, for inspiration after injury: Lauren Shevchek


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


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


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

Ask a Professional: Covering Mobility Costs in a Broken System

Time and time again, Help Hope Live clients tell us how difficult it can be to secure life-changing mobility equipment after a catastrophic injury. To get a professional perspective, we spoke to Jeffrey M. Brandt, the founder and CEO of Ability Prosthetics & Orthotics, Inc., and Julie McCulley, a resident prosthetist orthotist. Ability P&O provides artificial limbs and braces to help patients “move freely and actively.”

From left: Marlies Cabell, Jeffrey Brandt, Robin Burton, Taffy Bowman, and Julie McCulley


How can mobility impact your life after an injury or debilitating illness?


Mobility can be key to feeling independent again after injury or illness

Julie: Many times, individuals who have undergone an injury or amputation fear they may be unable to perform the basic movements that will allow them to move independently. A well-designed prosthesis can potentially allow a person to regain FULL independence and, for some people, even participate in activities they have never tried before!

Jeffrey: Devices are important, but that’s just 30% of our jobs. The rest is psychosocial: lending an ear, giving suggestions, and providing support. We offer adaptive sports events, community events, and educational opportunities in addition to physical mobility support. These elements can help individuals to re-connect with their community and begin building their lives back up again.

We aren’t social workers, but being called social workers is a compliment to our team. It’s vital for us to promote community connections and psychological satisfaction.


What’s the best way to support a friend living with an injury?


Show support for someone with an injury by being an informed listener

Jeffrey: First of all, listen. Prioritize communication and getting to know that individual person’s story and what they care about. Do your own research so you can help to connect the individual with compassionate and competent resource providers in his or her community.

Julie: It is important for family members and friends to attend support groups so that they can talk to others who are sharing a similar experience. Getting involved in activities and organizations like the Challenged Athletes Foundation, Adaptive Adventures, or Athletes with Disabilities will allow you to develop a community of peers with valuable insights.


What is a common misconception about life after injury that you have encountered?


Your health needs and abilities may change over time

Jeffrey: Your lifetime needs will change after an injury. Just because someone feels great today doesn’t mean that will still be the case in two years or five years. Sometimes an individual who is doing great with rehabilitation could still need more equipment or additional resources to truly make progress.


Can financial concerns be a barrier to mobility?


Finances can be a barrier to life-enhancing technology

Julie: A prosthetic leg can cost anywhere from $7,000 to $50,000. This cost depends on the level of amputation and the components necessary to allow a person to reach the activity level they are striving to reach.

Jeffrey: From a patient perspective, our insurance system is broken. Insurance companies view many mainstream mobility requirements as luxuries and consequently won’t cover the cost. That may extend to physical therapy at any level, life-changing medical supplies, replacement supplies, or equipment that must be altered as an individual ages or makes mobility progress.

Some insurance plans will only pay for one prosthetic limb within a patient’s lifetime. If you are someone who relies on a prosthetic limb, you may find that you need a new limb every 6 months based on how quickly you progress with rehab or how your body grows and changes naturally over time. Under your plan, the entire cost of those new limbs would be out-of-pocket for you and your family, possibly for a lifetime.

You may need a new limb every 6 months, which could be an out-of-pocket cost

The irony is evident in this example. Say someone with medical insurance needs a $12,000 prosthetic leg. Research has shown that if insurance companies deny coverage for that $12,000 leg, the patient will end up costing the industry $100,000 or more, because that individual is no longer able to work and therefore contribute to the overall economy.

Insurance companies are in the business of not paying out benefits whenever possible. We combat this reality by opening lines of communications to other patient resources, including organizations like Help Hope Live than can help to relieve the financial burden of out-of-pocket mobility costs.


Jeffrey is the founder and CEO of Ability Prosthetics & Orthotics, Inc. Julie, MPO, MS, ATC/L, is a resident prosthetist/orthotist at Ability Prosthetics & Orthotics in Exton, PA.

A Tribute to the Gift of New Life

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

Touched by Transplant 2017 Help Hope Live


Amanda Washek Help Hope Live

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

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

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

Amanda Washek, South-Atlantic Liver Transplant Fund

Transplanted August 11, 2015


Annie McMahon Help Hope Live

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

Annie McMahon, New York Lung Transplant Fund

Transplanted December 2016


Brian McCormick Help Hope Live

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

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

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

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

Transplanted April 13, 2017


Christopher Anthony Zerfass Help Hope Live

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

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

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

Christopher Anthony Zerfass, Mid-Atlantic Kidney Transplant Fund

Transplanted September 10, 2014


Deborah Hopper Help Hope Live

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

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

Deborah Hopper, Northeast Lung Transplant Fund

Transplanted May 3, 2012


James Michael McLester Help Hope Live

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

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

James Michael McLester, South-Central Kidney Transplant Fund

Transplanted December 9, 2015


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

Janet Martin Kafer, South-Central Liver Transplant Fund


Josh Bulvin Help Hope Live

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

Josh Bulvin, Mid-Atlantic Heart Transplant Fund

Transplanted March 10, 2010


Joseph Dinas Help Hope Live

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

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

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

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

-Wife of Joseph Dinas, Southeast Lung Transplant Fund

Transplanted March 24, 2015


Joseph Ozoniak Help Hope Live

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

Joseph Ozoniak, South-Atlantic Heart Transplant Fund

Transplanted May 28, 2011


Kevin Jamieson Help Hope Live

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

Kevin Jamieson, Southeast Liver Transplant Fund

Transplanted October 23, 2015


Maylin Palma Help Hope Live

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

Maylin Palma, Great Lakes Kidney Transplant Fund

Transplanted July 21, 2015


Pat Donovan Help Hope Live

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

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

Pat Donovan, Northeast Lung Transplant Fund

Transplanted July 31, 2016


Susan Dow Smiley Help Hope Live

“It means bringing new life into a body oxygen depleted

Returning to activities without being tethered and seated

New opportunities, new beginnings have started

The faces of loves ones not broken hearted

An ending rescripted

A future unrestricted

Hearts uplifted

Time gifted

The ability to breathe without difficulty and strife

Lungs reconstructed by a surgeon’s knife

My joy is great, my heart is full

Thankful to God, I am eternally grateful.”

Susan Dow Smiley, Southeast Lung Transplant Fund

Transplanted February 18, 2017


Tom Cumming Help Hope Live

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

-Wife of Tom Cumming, Southwest Liver Transplant Fund

Transplanted December 2016


Victor Melendez Help Hope Live

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

-Wife of Victor Melendez, New York Kidney Transplant Fund

Transplanted December 8, 2016


Touched by Transplant 2017 Help Hope Live

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

A Selfless Co-Worker, A Mom Who Won’t Give Up, and the Power of Altruistic Donation

With a little help from our  team, Help Hope Live clients are popping up in headlines every month. Check out three standout stories from spring 2017.


Freddie Hale: Co-Worker Gives the Ultimate Gift


Fighting diabetes, Freddie Hale is undergoing dialysis three days per week for four hours per day – yet he’s still working diligently at Lowe’s in his hometown of Nampa, Idaho. The close bond between Freddie, his co-workers, and the Lowe’s management team lead to an incredible next step: one of his co-workers offered to be a living kidney donor to save Freddie’s life.

Freddie Hale Help Hope LiveTia plans to donate a kidney to her co-worker, Freddie

“I get to help him live,” said his future donor Tia Hess in an article for the Idaho Press-Tribune. “If you can help someone, why not?” Freddie sang her praises, saying, “She’s so giving. I could never repay something like this.” He is waiting for the lifesaving transplant to plan a wedding ceremony with his fiancée, Christa, who calls Tia “my personal hero.” Freddie fundraises for the Northwest Kidney Transplant Fund (when he’s not belting out Billy Joel covers in his garage, that is).

(‘Because it’s Freddie: Co-worker to donate kidney as living donor this summer)


Ilysa Winick: Coast to Coast Support for an Amputee Mom


“This mom of two could be you,” Denise Albert wrote for Good Housekeeping. She is profiling New York resident Ilysa Winick, an active mom, wife, and nursery school owner, who contracted a near-fatal blood infection in June 2016. The infection caused her body to go into septic shock, shutting down her vital organs. She woke up in the hospital a month after she went in. Both of her feet had to be amputated below the knee as did her hands below her elbows.

Ilysa Winick Help Hope Live

Ilysa with her husband and two sons

To complicate matters further, the infection resulted in end-stage renal disease and Ilysa now needs a kidney transplant. “Her two boys need their mom,” wrote Albert. “Her husband needs his wife.” This video shows Ilysa walking with new prosthetics:

Ilysa’s cousin Chrissy, who lives across the country from Ilysa in Florida, organized a CycleBar fundraiser in May to rally her local community to support the New York Catastrophic Illness Fund in honor of Ilysa. “It can happen to anybody,” said Chrissy.Chrissy proved that your Help Hope Live fundraising potential doesn’t have to stop at state lines.

(This Mom, a Recent Quadruple Amputee, Is Now Fighting to Survive)


Mary Kriete: Inspired by Altruism on the Waiting List


Mary Kriete has been on the kidney transplant waiting list for nearly three years. While she waits, she must pursue dialysis for an hour per session four times per day. Her kidneys have just 8% functionality, down from 20% when she started dialysis.

Mary Kriete Help Hope Live

A selfless choice could help Mary get the gift of life

Mary can no longer work, live an active lifestyle, or even keep pets until she gets a transplant. Eight or nine people have offered to become living donors for Mary, but none passed the required medical clearances. In the meantime, she fundraises with Help Hope Live with creative community events like Dine and Donate percentage of sales nights, high teas, silent auctions, and by requesting donations in lieu of birthday gifts. Donations are collected in her honor via the Midwest/West Kidney Transplant Fund.

An article from The Missourian puts Mary’s story alongside an incredible tale of hope. Dr. Jackie Miller had planned to be an altruistic donor for decades. In August 2016, with the support of family, friends, and her faith, she donated her kidney to a stranger. Dr. Miller hopes her altruistic choice will help others to make the decision to be living donors to help people on the transplant waiting list like Mary.

(‘It Was a Beautiful Journey’)


Get your Help Hope Live fundraising story in local headlines! Contact your Fundraising Coordinator today and let us help you with press outreach.

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.

I Went from Independent Living to a Nursing Home After an Infection

My name is Jane Koza. I am 58 years old. I went from being a healthy adult to living in a nursing home by age 50. This is my story.


I was an all-star athlete in my youth, playing basketball and softball competitively. During my senior year of high school, we won the state championship in softball and basketball. I loved the experience of being on a team. Those great memories laid the groundwork for continuing athletics in college.

Jane Koza Help Hope Live

Jane was athletic and active in her youth


In 2005 when I was in my 40s, I learned that I needed knee surgery to walk comfortably. The knee surgery did not go as planned, and I contracted MRSA, which led to a second surgery for a total knee replacement—my knee joint had to be entirely removed.

After the second surgery, I slipped into a coma due to the infection. I went into a grand mal seizure and arthritic septic shock, resulting in a second infection. The infection traveled to my spine and left me with transverse myelitis, which resulted in paralysis from my chest down.

By April 2006, I was living a nursing home. I hadn’t even turned 50 years old yet.

Jane Koza Help Hope Live

Jane with one of her best friends, Stanley, in the nursing home


The transition was hard psychologically. You have to come to grips with the fact that you will never walk again. You expect to face medical challenges when you are in your 70s or 80s, not when you are in your 40s. It was also difficult to accept the fact that the best place for me to be would be in a nursing home where I could receive round-the-clock care as needed, including continual social and physical support.

I am different from the other residents here at the nursing home. I am still very young and active compared to most of the other residents. I still enjoy going to concerts, shopping, and visiting with friends outside of the nursing home, regularly.

Jane Koza Help Hope Live

Jane, pictured with her sister, is younger and more active than most other residents


It was extremely important to me to find independence and avoid being bedridden once I realized that I would be living in a nursing home. I also had to find a way to cover some of the medical expenses associated with my new life, including:

  • A wheelchair with greater flexibility and movement than the geriatric medical chair provided by the nursing home;
  • Special wheelchair cushions that reduce painful pressure sores, which are not covered at all by insurance;
  • Physical therapy so I can learn to transfer myself from my wheelchair to a bed or seat, and gain more self-sufficiency so I can someday leave this nursing facility;
  • Daily essentials like drainage bags, backpacks, cup holders, and adaptive equipment
Jane Koza Help Hope Live

Jane was overjoyed to meet her first Help Hope Live fundraising goal

These things can improve my quality of life and are just one part of what makes life worth living.

Even having the same caregiver day-to-day can improve your life when you are living with an illness like transverse myelitis. I will also encounter additional expenses in the future, so I am setting my sights on fundraising to offset the cost of a power chair, a private caregiver or aide, and more advanced physical therapy programs. These expenses can make a difference to my level of independence in the future. They would have a profound effect on my life.

Jane Koza Help Hope Live

Jane creates unique tree of life coloring pictures in exchange for donations


When my priority was to get a better chair than what was provided by the nursing home, I began fundraising with Help Hope Live for the Mid-Atlantic Catastrophic Illness Fund in 2015.

My beloved high school, Mother Seton, learned about my fundraising efforts and really came through to help me. The alumni association was instrumental in helping me reach my first fundraising goal. I couldn’t have done it without them. With their help, I was able to reach my goal and get the wheelchair I had been waiting for.

Jane Koza Help Hope Live Mother Seton

Jane’s former high school has helped her to fundraise

Help Hope Live has made a huge difference in my life, both in connecting me with old friends who can support me and in helping me monetarily offset the out-of-pocket medical expenses I could not afford alone. For that, I am eternally grateful.

To me, hope means that things can be better than they are today in the future.

Jane Koza Help Hope Live

Jane calls herself a “true survivor” navigating life with transverse myelitis


Jane Koza fundraises for the Mid-Atlantic Catastrophic Illness Fund. Click or tap here to read more stories about how mobility can change lives.

Touched by Transplant: My Childhood Friend Became My Kidney “Sister”

As she experienced end-stage renal failure, Frances V. Gilmore endured 10 hours of dialysis every night to stay alive. She began fundraising with Help Hope Live in May 2012 for a lifesaving kidney transplant. She is the fourth and final winner of our 2017 Touched by Transplant “New Life” Contest in recognition of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live

“I am so honored by my living kidney donor, Sandi Hamilton-Spall.

I was on peritoneal dialysis for two years because of a family history of high blood pressure that affected my mom, my older brother, and myself. I was my mom’s caregiver in the 70s until she got a kidney transplant in ’79. Her body rejected the deceased-donor kidney in ’82. I lost my brother in 2013 [when] he stopped dialysis.

I got sick in 2010. Never in my life did I think I would be traveling down the same path my mom had. I remembered how hard it was for her.

When I joined the kidney transplant waiting list, I posted on social media and asked my friends if anyone had a good, healthy kidney they wanted to give me. My childhood friend, Sandi, who I had lost contact with for 20 years, came to Texas for a visit that year. She offered me her kidney.

Frances and Sandi

Sandi and Frances on the day of their transplant.

I received my beautiful kidney “Creedy” on September 11, 2012.

Sandi saved my life. I always considered her a sister growing up and she proved just how special of a person she is by stepping up and being there for me. She will always be my hero and ‘sister.’”

I love my living donor2

We loved hearing Frances’ Touched by Transplant story. Find updates and more on the Help Hope Live campaign page in honor of Frances at https://helphopelive.org/campaign/1370