Tag Archives: #awareness

April is Donate Life Month, and We Are Touched by Transplant

April is National Donate Life Month, a commemoration that we and our patients love to celebrate. This year, Donate Life America, who launched the awareness month in 2003 with its partners, has chosen a special symbol to mark the month: a pinwheel.

Donate Life Month pinwheel 2017

As the organization explains, the imagery is “symbolic of an instrument that turns obstacles into opportunities. Each Donate Life pinwheel has four sails supported by one stem, symbolizing the power one person has to be an organ, eye, tissue or living donor. This April, we encourage you to stop to feel the breeze, watch the pinwheels and think of the lives of those touched by donation and transplantation.”


Since April 2016, 177 Help Hope Live patients have received life-changing transplants. Let’s hear some of their testimonies.

Touched by Transplant 2017 Help Hope Live


“Alive Again” with a Kidney and Liver


Brent Lauffer has fought congenital hepatic fibrosis (an inherited liver disease) since his teenage years. He received a liver/kidney transplant in January 2016.

“The liver is continuing to work and the new kidney is putting out urine!” he wrote in an update on his Help Hope Live campaign page. “As I now live, having received my liver and kidney transplants, I want to thank YOU for your help. You give me HOPE for a bright tomorrow. God bless you for your prayers and support.”

Brent Lauffer Help Hope Live

“You give me HOPE for a bright tomorrow.”

Brent speaks to some of the everyday blessings that came from the transplant, saying “it is amazing to wake up and NOT feel sick, hungry, and have to pee! I am alive and headed towards a real life again. I am so thankful for my friends and family and those whom I’ve never met who are supporting me.”

“I’m pictured here with George. He received the other kidney (from our deceased donor)!“

Brent Lauffer Help Hope Live

Brent with George, who received a kidney from the same donor

Brent fundraises for the Help Hope Live Mid-Atlantic Liver/Kidney Transplant Fund. Fundraising gives his community a way to tangibly support his transplant recovery journey. As one contributor wrote to Help Hope Live, “You are on the side of the angels with the work that you do.”


A Record-Setting Recovery


Living with end-stage renal disease and in need of a pancreas/kidney transplant, Kathe Wimberly Neely has been fundraising with Help Hope Live since 2011. She witnessed countless patients receive the gift of life as she prepared, year after year, for her own miracle. In February 2017, “the call” finally came.

“Two weeks ago, I received the call,” Kathe posted in March. “One week ago, I was discharged from the hospital–a record recovery, according to my medical team. Another record, according to my pharmacist: the fewest discharge meds she had ever seen. My healing has been amazing. Very few side effects–all very manageable. It’s all temporary and I will get through it with a smile.”

Kathe Neely Help Hope Live

Kathe says she is experiencing “a record recovery”

While the gift of life was long-awaited and personally impactful for Kathe, her post-transplant thoughts were with the donor: “That was probably the day a family was facing the greatest heartache one can even imagine. In my eyes, they were so brave to go through such a time while also making some decisions that would forever change my life and the lives of possibly many others with their gift of organ donation. This family, though I do not know who they are, is in my thoughts and prayers daily. This family is who I think of every single night as I fall asleep. I hope to know them one day when they are ready.”

Kathe’s life post-transplant includes a wealth of community support. “Life is grand,” she reported, as “each and every person I know and love brings sunshine to my life. I have met many new people along my journey, each one adding new rays and brightness to my appreciative and over-flowing heart. Again, words escape me.”

Kathe Neely Help Hope Live

Kathe with her custom Donate Life “Pay It Forward” plate

Sometimes the beauty of new life lies in the smallest details, as Kathe’s frequent updates highlight. “Couldn’t sleep, so I came downstairs to sit on the sofa because I can,” she posted. “I’m not tethered to a 15-foot tube that’s attached to a dialysis machine in my bedroom anymore. This is amazing!”

Kathe fundraises for the Help Hope Live South-Atlantic Kidney/Pancreas Transplant Fund. “Love how much you do for others,” she wrote to us. “Much love and thanks for the amazing work you do. I’m so glad to work with my Help Hope Live fundraising team on my transplant journey.”


New Lungs, New Life


Pat Donovan and his family were plagued by uncertainty when he was diagnosed with idiopathic pulmonary fibrosis (IPF), a chronic lung disease where the cause is generally unknown and the only treatment is a double lung transplant. Pat was fortunate to receive a transplant in July 2016 after only 30 days on the transplant waiting list.

Pat Donovan Help Hope Live

Pat received a double lung transplant to fight IPF

“The miracle of Pat’s transplant continues,” reads a recent update on his Help Hope Live campaign page. “Our gratitude is overflowing! April is Donate Life Month and we celebrate Pat, who is doing extremely well, slowly and steadily regaining strength at this stage of his recovery. Walking without [supplementary] oxygen was made possible by an organ donor! Pre-transplant, even simple activities left him gasping for breath and coughing relentlessly.”

Pat Donovan Help Hope Live

“Made possible by an organ donor!”

Along with an incredible improvement in health comes the unfortunate and ongoing burden of transplant-related costs. “There is a need to continue to raise funds for uninsured transplant expenses,” explained an update. “The cost of radical dietary changes to stave off infection and organ rejection are real. Co-pays and deductibles are a concern for all of us. The daily medications he will need for a lifetime are literally a matter of life and death. Travel, lodging, and food for trips from Pat’s home in central Maine to the Boston transplant clinic are not as frequent, but they do come with a cost.

Pat Donovan Help Hope Live

Post-transplant care and medical needs “come with a cost”

Pat fundraises for the Help Hope Live Northeast Lung Transplant Fund.


Fundraise to Sustain the Gift of Life


Touched by Transplant 2017 Help Hope LiveAs Help Hope Live patients have expressed time and time again, a transplant can be an incredible opportunity for greater health and happiness, but it isn’t the end of the road. Fundraising can help to offset some of the lifelong financial burdens of life pre- and post- transplant, including testing, donor search fees, anti-rejection medications and medical travel for routine follow-up care.

Donate Life Month is a great opportunity to start or re-start a transplant fundraising campaign. Help Hope Live was founded in 1983 by a transplant surgeon and his wife, a nurse, who wanted to help more patients have access to transplant procedures. Since our founding, our community-based fundraising campaigns have provided more than $67 million in financial support to cover patients’ unmet transplant related expenses.

Stay tuned for a whole month of memorable Touched by Transplant stories, and keep your pinwheel spinning.

Mobility Matters: How To Get The Equipment You Need

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


What Our Nonprofit Can Do For You


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

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

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

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

the cost of a spinal cord injury


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

Richard Travia Katie Travia HelpHOPELive

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

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

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

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

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Our Partnership With NMEDA


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

Mobility Awareness Month NMEDA

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


Voices Of Hope: Jacob Gets His Van


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

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

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


Get Started!


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

Mobility Matters: Community Support Can Open Doors After Injury

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

Cole Sydnor HelpHOPELive

Cole coaches the Richmond Sportable Spokes wheelchair basketball team


Are mobility and independence important to you?


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


How has physical therapy impacted your life?


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


What financial challenges has your family faced since the injury?


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

Cole Sydnor HelpHOPELive

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

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


How did your community support you after you were injured?


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

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

Cole Syndor HelpHOPELive

Friends and family were a big source of support


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


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

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


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


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


What are you most proud of?


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

Cole Sydnor

Cole is proud of his diving safety advocacy work


What are you looking forward to this year?


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

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


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

Between Hope And Acceptance

Abi Dietz was on her way to school in September 2012 when an auto accident left her with a severe traumatic brain injury. After the accident, Abi was unable to move or communicate. After extensive inpatient rehabilitation, in June 2013, Abi was able to move into her mother’s home. Her family began fundraising with HelpHOPELive for uninsured expenses to help improve Abi’s quality of life and maximize her mobility and independence. Abi’s mother, Georgina, gives us an idea of how life changes after a traumatic injury.

Abi Dietz HelpHOPELive

Abi was injured in 2012


Describe a day in Abi’s life.


Abi is 100% dependent on the assistance of others for all activities of daily living. Each morning when Abi wakes up, I or another caregiver do passive range-of-motion exercises with her. We do her personal care and get her into her wheelchair using a hoyer lift. We then read to her, watch YouTube music videos or do other movement exercises, such as throwing a beach ball and asking her to bat or kick it back to us. This responsive movement is actually new, and even though it seems slight, we are glad that she is responding more than she previously had been.

We have Abi stand in the standing frame three times per week. We take her to scheduled doctor’s appointments, the mall, a local art museum and to the park when the weather is nice. We have a music therapist come in weekly and spend an hour working with her. She listens to familiar songs she used to like, and the therapist tries to get her to play a digital guitar on an iPad or move her hand and arm to play a simple instrument.


Have you noticed any improvements since the injury?


Abi is now able to move her left side at times, but her communication is inconsistent. At times, she is more alert and moves more to look around at her environment. She also shows more movement when giving someone a fist bump, trying to hold something and letting it go again, or reacting to someone throwing a ball towards her.

Abi Dietz HelpHOPELive

Abi is currently 100% dependent on the assistance of others


What are some of the biggest challenges of life with a traumatic brain injury?


The accident has changed our family dynamics in many ways and it has been difficult. Finances are a struggle as well as feelings of isolation. The struggle between accepting what is and still having hope is also a challenge.


What are you fundraising with HelpHOPELive for?


We have been able to purchase an accessible van thanks to fundraising and financial help from a family member, but we still have outstanding expenses. Abi was a musician and music therapy has reached her in places that other therapies haven’t. This type of therapy is not covered by insurance and we use the money raised through HelpHOPELive to pay for it. We also fundraise for in-home massage therapy and physical therapy. Abi has painful spasticity issues and these therapies help stretch and relax her so that she is more comfortable.

music therapy

Music therapy is not covered by insurance


What does hope mean to you?


Hope means believing that things can change. It takes a lot of patience to wait for change to happen and as I said before, it is hard to find the balance between hope and acceptance.


What can the average person do to recognize Brain Injury Awareness Month in Abi’s honor?


You can donate to HelpHOPELive in honor of Abi to help her secure life-enhancing therapeutic treatment that could help her regain mobility and communication skills. You can also send a card to her or to anyone who has a traumatic brain injury. We receive beautiful cards with nature photography from one couple at least once per month. It is so nice to know we are not forgotten.

March is Brain Injury Awareness Month

March is Brain Injury Awareness Month


Follow Abi’s story at helphopelive.org. If you know a family that needs help covering the uninsured expenses related to a traumatic injury, start a fundraising campaign with our nonprofit today.

Voices of Hope: Living With LAM

I once wondered if I would make it to age 30; I’m 38 now. I am Nicole Seefeldt, and I have been living with the chronic lung disease lymphangioleiomyomatosis – more commonly known as LAM – for more than 10 years.

Nicole Seefeldt HelpHOPELive

Nicole after an improv workshop


My Story


In 2010, I began having a yearly talk with my doctor about a (double lung) transplant. I was feeling fine at the time with my LAM, but my doctor knew it was a good idea to bring it up as soon as possible to prepare me. At every session, the doctor would check my oxygen numbers to determine whether or not getting evaluated for a transplant would be in my immediate future.

For me to stay on my insurance plan, I had to work 30 hours a week. That was a significant reduction to my original work hours, but my energy levels became so unpredictable, I could only work for an hour or two on a good day before needing a break. I was planning to work up until my transplant evaluation, possibly part time. But my doctor advised me to quit working in July 2015 when I experienced a rapid drop in my oxygen levels and had to be taken to a hospital immediately. My doctors still don’t know what caused the desaturation, but since then, I have needed oxygen 24/7.

I had to talk with my parents and friends to tell them I would need their support and a dedicated caregiver to help me through the process. My best friend stepped up right away! Luckily, support is one thing I was not lacking as I began to prepare for transplant: I am well-connected via social media, volunteer work and improv comedy, which I like to do in my downtime.

Nicole Seefeldt HelpHOPELive

Nicole set a goal of $20,000 when she started fundraising

When I started fundraising with HelpHOPELive, I set a goal of $20,000 in order to cover the expenses I would be responsible for when the time came for my transplant. The $20,000 would also allow me to receive two challenge grants from HelpHOPELive.

HelpHOPELive: Contact your Fundraising Coordinator today to learn more about how to get a challenge grant when you reach a fundraising milestone.

Since last year, some of my disability insurance benefits have been decreased, changed or even eliminated, so my out-of-pocket expenses may continue to increase, especially the temporary housing costs I’ll face during my post-transplant recovery period (I don’t meet the distance requirements set forth by my insurance provider to be covered or reimbursed for this expenses). That’s why fundraising is an essential part of this journey.

It’s easy to feel shame and guilt when you have to stop working because of an illness. Fundraise to take some of the pressure off for you and your family and free up your expenses to stay afloat until you can get to a healthier place. It’s important to be transparent if you’re struggling. You have to say, look, this is why I need this money: I am on X medications that cost me X per year; my insurance premiums cost me X per month, even with Medicaid. People understand that as long as you give them something quantifiable.


How I Keep Hope Alive


There are a few things I do to fight back while I wait for a life-changing transplant:

  1. Keeping myself healthy. My exercise levels are back to a healthy level so I can do a few light weights and other things to build up my upper body for transplant. I need my upper body to be strong enough to rebound and heal after the transplant takes place. There were times in the past where I wouldn’t feel good and would get frustrated with exercise. But exercise is one thing I feel like I can control, and my lungs feel much clearer when I do it. It’s the one gift I can give my medical team to fight back.
  1. Staying patient. Living with a chronic illness and facing your own mortality puts your priorities in order in terms of what you value. Ultimately you learn that it’s rough, but it’s not insurmountable. You find your ways to cope and reconcile things. You have to at least in some aspect use whatever you have to fight back and to hang in the fight. I’m empowering myself and other people to make life more manageable. Maybe the research is too late for me but it might not be too late for someone else.

Nicole is fundraising with HelpHOPELive for LAM-related expenses, including a limited period of lost wages as she remains on long-term disability, COBRA insurance payments, oxygen rentals and other uninsured costs.

Life With A Rare Disease For 7-Year-Old Paul Mustol

At 6 years old, Paul Mustol was diagnosed with Duchenne Muscular Dystrophy (DMD). Paul’s family began fundraising with HelpHOPELive in October 2015. Here is a look at life with DMD as told by Paul’s mother, Anna.

Anna and Paul Mustol HelpHOPELive

Paul with his mother, Anna


Describe a day in Paul’s life.


The morning begins with Paul calling to us to remove his nightly leg splints. We carry him downstairs. He takes two medications and several vitamin supplements with his breakfast. He needs assistance getting dressed. A special needs school bus arrives and Paul is loaded on the bus using a lift to avoid straining his legs.

Once he gets to school, he needs to rest before he does his work with the other students in his class. He needs extra help staying focused and understanding assignments. On a weekly basis, he receives therapy from a physical therapist, occupational therapist and speech therapist.

At dinner, he takes a few more vitamins. We practice deep breathing to keep his breathing muscles strong. We stretch and massage his muscles to reduce muscle contractures. We put the splints back on his legs to stretch them during the night.

Mustol family HelpHOPELive

“We…just try to enjoy each day,” says mom, Anna


What’s the most difficult part of the day?


The most challenging part of each day is at the end of the day when Paul is tired and weak. Instead of running around or riding a bike outside with friends, he is exhausted. It is a reminder of what he will face in the future.

We try not to focus on all the difficulties to come, but instead just try to enjoy each day. We want to appreciate the time we have together. It is uplifting to see how Paul has persevered with a smile on his face through the tumult of the last five months since the diagnosis. We feel blessed by the support and love coming from our family, friends and church community. From the minute we shared his diagnosis, people have offered help and have clearly shown us that we are not alone.


What does hope mean to you?


Hope cannot be taken away by a disease. A disease may shorten a life or make it more challenging, but it does not take away the value of that life. We have hopes for him and for his life. We hope that he can see his life as an opportunity to make a positive impact on those around him. We hope that through his disease, he can teach others about perseverance and overcoming obstacles. Of course, we always hope for a cure for DMD.

Paul Mustol HelpHOPELive Duchenne muscular dystrophy

“Hope cannot be taken away by a disease.”


What do you fundraise for?


The average annual cost per person living with DMD is over $50,000. When we first received our son’s diagnosis, we had no idea of the cost involved. Even though it is a genetic disorder, no one in my family had ever received the diagnosis before; it can occur as the result of a spontaneous mutation. Health insurance covers some of the cost, but many expenses are only covered after we meet a high deductible.

We will always need to cover the cost of daily medications, weekly therapy sessions and doctor appointments. He needs tests like echocardiograms or pulmonary functioning tests from time to time as DMD weakens his heart and breathing muscles. Every six months, we travel to the certified DMD care clinic, which is out of our home state.


How will Paul’s needs change in the future?


Because DMD is a degenerative disease, my son’s needs will increase dramatically with time. He will need a power wheelchair full time and an accessible van and home if he loses function in his arms, hands or legs. He may also face surgeries for bone fractures and scoliosis. Eventually, he will need machines to help with breathing and palliative care. The average life expectancy for people living with DMD is around 25 years, but the type of medical care one receives can make a big difference. Today there are more and more cases of people living with DMD living into their early 30s thanks to medical advancements.


How can we recognize Rare Disease Day in honor of Paul?


Think of someone you know in your community that has a disability or is sick. Find a way to show him or her kindness, whether through an act of service or just through a conversation. See the individual as valuable and important; don’t just see his or her disease. If the person wants to share his or her experience with the disease, listen and educate yourself. Ask how he or she is doing, and listen for more than just a standard quick response. If you are able, share your contact information and indicate that you are available to help if the need arises.

Paul Mustol HelpHOPELive muscular dystrophy

Celebrate Rare Disease Day in honor of Paul

The more attention rare diseases get, the more likely it is that researchers and pharmaceutical companies will investigate ways of treating these diseases. Awareness and knowledge also allows for earlier detection and diagnosis.


Follow Paul’s journey with DMD or donate in his honor on his HelpHOPELive Campaign Page. If you or someone you love is living with a rare disease or other catastrophic illness, start a fundraising campaign with our nonprofit to help offset medical and related expenses.

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.