Tag Archives: Crowdfunding

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

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

Morgan Ott HelpHOPELive

Morgan fundraises for mobility essentials


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


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

Morgan Ott HelpHOPELive

Morgan says she “is learning new things every day”


How did your community respond to your injury?


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

Morgan Ott HelpHOPELive

Friends and family have supported Morgan throughout her journey

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


Will fundraising influence your mobility options?


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


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


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


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


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

Morgan Ott HelpHOPELive

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


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


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


Do you still strive to maintain an active lifestyle?


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

Morgan Ott HelpHOPELive

Morgan attends a chair-inclusive dance class


What are your biggest mobility priorities at the moment?


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


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


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


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


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

Morgan Ott HelpHOPELive

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


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

HelpHOPELive Clients In The News October 2015

October brought us falling leaves, pumpkin spice indulgence and autumn fundraising milestones! Here are three compelling client stories featured in the news this month.


Matt Collura: Annual 5K Provides Financial And Emotional Benefits

Matt Collura 5K Run/Walk

In March of 2011, the Collura family, of Monroe Township, N.J. was rocked by a shocking accident: a snowboarding injury left then-28-year-old Matt Collura reliant on a wheelchair for mobility as he coped with a life-threatening traumatic brain injury. From acquiring specialized accessibility equipment that would keep him safe in his home to pursuing intensive rehabilitative therapy, Matt was facing a long emotionally and financially draining road to recovery. His friends and family members turned to HelpHOPELive for support. With Matt’s passion for athletics and running, a friend suggested planning a 5K fundraiser in his honor to rally community members to help cover the uninsured expenses as a result of injury.

Matt Collura 5K Run/Walk 2015

The Matt Collura 5K Run/Walk celebrated its 5th anniversary on October 11, 2015. The event draws hundreds of supporters who enjoy the opportunity to give back to their friend and neighbor as he continues to pursue recovery with dedication. For Matt and his family, the event is far more than an opportunity to offset vital medical expenses; the run provides a powerful dose of emotional support that keeps him striving forward. “This is a chance for [us] to participate in a day that Matt refers to as the best day of the year,” his supporters wrote on his HelpHOPELive Campaign Page. Since the accident, funds raised from the Matt Collura 5K Run/Walk have helped Matt to pursue the rehabilitation he needs to speak, walk with minimal assistance and pursue a greater degree of independence by moving out of his parent’s house and into a group home. (5K supports Monroe man’s recovery from accident)


Patrice Penny-Henderson: ‘Angel’ Aids Music Teacher With Rare Disease

Patrice Penny-Henderson Elkhart kidney transplant

A rare blood cell disease severely reduced Patrice Penny-Henderson’s kidney function, forcing the elementary school music teacher to receive dialysis three times each week to stay healthy. Despite Medicare coverage, out-of-pocket costs of $20,000 or more made a kidney transplant seem out-of-reach for Patrice. That is, until a chance encounter blossomed into an unexpected lifeline.

In 2015, seven years after she was diagnosed with end-stage renal failure, Patrice reconnected with a former co-worker, Susan Law, who was stunned to hear about her medical ailments. Susan sprang into action, connecting Patrice with HelpHOPELive and helping her to plan community fundraisers to cover her medical bills. Susan and Patrice “chose HelpHOPELive over other popular sites like GoFundMe” in order to secure a tax-exempt donation option for her contributors and expert insights from a HelpHOPELive Fundraising Coordinator. Patrice calls Susan “an angel” for stepping in to support her efforts to secure a lifesaving transplant. (Longtime Elkhart music teacher…needs kidney transplant due to rare disease)


Michael Carns: Military Vet Puts Difficulties On Display To Fundraise For MS

Michael Carns veteran MS multiple sclerosis Marine National Guard

After dedicating himself to years of service in the U.S. Marine Corps and National Guard, Michael Carns was attacked by an enemy of a different kind: multiple sclerosis (MS). The 46-year-old father of three began to rapidly losing his independence and his mobility, struggling to provide for his three children as daily tasks like cooking and using the bathroom became formidable obstacles.

That’s when Michael learned about a treatment trial in Chicago that offered hope for potentially halting the progression of his MS in its tracks. He would need to raise $150,000 to be eligible for the potentially life-changing course of treatment. Michael knew he had to do something to show his community why he needed their emotional and financial support. He reached out to a local news station and offered them a chance to film the impact of MS on his daily life.

In a video interview, Michael shows viewers what life with MS really looks and feels like, from painstakingly transporting himself to his son’s football games to coping with fears that he will not be there to walk his daughter down the aisle on her wedding day. For Michael and his children, fundraising with HelpHOPELive has come to represent a second chance – an opportunity for Michael to pursue advanced treatment that could give him back his independence. “Believe that there is hope, still, because there always will be,” affirmed his son Mikey. (Military veteran hoping for treatment to fight MS)


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

 

These Families Were Touched By Transplant

April is National Donate Life Month.To raise awareness about the importance of organ donation and to celebrate transplant donors, we are sharing stories of HOPE from patients and families touched by transplant. Here are our first three transplant stories.

touched by transplant full

Touched By Transplant: Struggle and Triumph

HelpHOPELive, Derek Avillanoza, Derek, HelpHOPELive, transplant, kidney transplant, transplant meds, post-transplant, kidney, kidneys

This is HelpHOPELive client Derek Avillanoza’s transplant journey.

I found out I would need a transplant in February of 2011. I became very ill. My doctor referred me to a nephrologist who told me the bad news, a conversation which I recall still today: “It’s obvious you will need a kidney. It’s just a question of when.” I was devastated. I started dialysis in June of 2011.

Honestly, I didn’t know that much about kidney transplants before I needed one myself. Then reality hit me. I educated myself, and tried to learn about everything concerning kidney failure. I am still learning and educating other people to this day.

My wife and I felt like we were on top of the world when we first found out we were a donor match through virtual testing. We got very emotional. We found out just days before the procedure that we would not be an appropriate transplant match: my body would reject my wife’s kidney because of higher antibody levels in my system. We were devastated, angry, disappointed and heartbroken. But after signing up for a paired kidney exchange, we experienced another cycle of intense emotions, this time positive, when we got the ‘final’ phone call in January of 2015.

I was absolutely nervous before the operation, because I didn’t personally know many people who had undergone a transplant. The transplant team at UC Davis was outstanding and very informative, letting me know exactly what to expect. I asked a whole bunch of questions!

The recovery process has been very humbling and has required a lot of self-discipline as I control my daily ritual. I have to take prescribed medications at a pre-appointed time twice a day, check my vitals twice a day, manage a strict diet to keep control of my diabetes, and fill out a daily transplant diary to monitor physical changes. I have to chart all of the medications I take (18 in the morning, 15 at night). Oh, and then there’s bloodwork twice a week, and a 6.5-hour drive every Tuesday to visit UC Davis. These steps are worth every minute – they extend my life. I am very thankful.

Friends and family have been very supportive, and I’m very grateful for their kindness and love. Without my wife’s constant urging, I would not even be here talking about my transplant today. I believe that we got married for a reason: she was sent down from heaven to be my angel.

I have had to medically retire from my career in government because of my illness. We were advised by the financial coordinator at UC Davis Transplant Center to pursue a fundraising campaign with HelpHOPELive to cover medical and relocation expenses related to the transplant. We continue to work with HelpHOPELive because we’ve started to receive medical bills associated with the transplant, and we are also incurring expenses related to the medications I need to stay healthy.

I am so blessed and grateful to have gone through this procedure. It has extended my life so that I can spend more time with my wife, children and grandkids.

These are the five words that describe my transplant journey: Grateful. Honored. Humbled. Overwhelmed. Emotional.

 

Touched By Transplant: A Sense of Destiny

David, David Ludwig, HelpHOPELive, transplant, lung, lungs, lung transplant, paying for lung transplant, post-transplant, transplant medications, transplant meds, cystic fibrosis, CF

This is HelpHOPELive client David Ludwig’s transplant journey.

I really couldn’t believe it when I found out I needed a double lung transplant. I always thought my cystic fibrosis would have been cured before I reached that point. The whole idea of a transplant seemed far-fetched to me, and I knew very little about transplants prior to having one myself. All I knew was that post-transplant, you live on immunosuppressants for the rest of your life. Unfortunately, I didn’t have much time to learn more about my transplant before it occurred.

I never actually received “the call” telling me I would get a transplant. I had just survived multiple emergency surgeries, including a procedure prompted by my lung rupturing which caused me to bleed out internally. I had a pneumothorax while receiving treatment for a cystic fibrosis-related illness, and I was in critical condition when I was transferred to the Keck USC Medical Center for transplant.

My family was very supportive and so were the friends who found out about my circumstances later. My aunt found HelpHOPELive, and she and my mother used my Campaign Page to fundraise for me while I was incapacitated.

I felt very calm when they offered me the transplant. My life was at stake. I remember giving the resident surgeon a thumbs-up when he asked if I wanted the double lung transplant. I had a strange sense of comfort during the entire process, despite having large extracorporeal membrane oxygenation (ECMO) tubes and a tracheostomy tube in my neck and additional tubes everywhere. A sense of destiny and the will to overcome seemed to envelop me during this time.

The recovery has been intensive, partially due to post-transplant kidney failure which lasted for six weeks. I was bedridden for several months, so I lost all muscle in my arms and especially in my legs. I had to learn how to walk again. I’m still building up stamina with my new lungs, and that has been the hardest part of the recovery process.

I have new expenses after the transplant to add to the expenses I have had to manage because of my cystic fibrosis. Now, in addition to anti-rejection medications, I take several drugs and numerous vitamins to offset the side effects of the immunosuppressants.

My future is optimistic. Cystic fibrosis is typically a death sentence, a 13- to 30-year time bomb. These new lungs have spared me from my original fate. I am forever grateful to my donor. My donor’s tragic loss has been my gain, and the same is true for many others. The biggest thing I’m looking forward to is playing a round of golf. Now, I will be able to do it without wheezing or breathing through the proverbial straw.

These are the five words that describe my transplant journey: Hope. Gratitude. Rebirth. Renewal. Happiness.

 

Touched By Transplant: Infectious Positivity

Josie, Josie Setters, Chase, Chase Setters, transplant, pre-transplant, fundraising, pre-transplant costs, pre-transplant expenses, HelpHOPELive

This is HelpHOPELive client Josie Marie Setters’ transplant journey as told by her father, Chase Setters.  

My wacky and energetic 5-year-old daughter, Josie, was taken to a specialist at The Children’s Hospital at OU Medicine in Oklahoma City to evaluate recurring bladder infections. During preliminary checks, it was discovered that Josie’s blood pressure was upwards of 160/90. She was immediately admitted, and two days later, we learned that Josie had chronic kidney disease. Her kidneys were operating at around 30%.

Josie, now 8, remains wacky and energetic despite her diagnosis. Her infectious positivity and silliness have united our community around her. She needs a kidney transplant to survive, and we are hoping to get Josie the transplant she needs in the summer so she can continue to attend school like a normal 8-year-old.

I’m in Information Technology by profession, and I’ve always been a bit of a geek. In early 2015, I posted a Facebook link to Josie’s story and HelpHOPELive campaign. Less than 5 minutes after I posted the link, Wedge, a serial gamer and host of the YouTube channel TheManaSource reached out to me and asked permission to use my story. Next thing I knew, I was tagged in a video that Wedge had created specifically to help my daughter fundraise.

This gesture meant the world to me. Most of us can grasp the idea of selfless giving, but once you witness this miracle in person, it is no longer an idea. It manifests in an incredibly powerful and humbling way, and it becomes almost impossible to express the gratitude you feel towards those who contribute.

We have received donations through HelpHOPELive from contributors across the U.S. One-time strangers who got to know us through Wedge’s video have donated over $1,000 to help Josie. My company of 75 employees pulled together to donate over $10,000, which the company matched.

Is human nature good or evil? Maybe my view has been skewed as I’ve worked to fundraise for my daughter’s lifesaving transplant, but my resounding answer is that our nature is good.

These are the five words that describe my transplant journey so far: Fear. Acceptance. Limitations. Waiting. Hope.

 

HelpHOPELive, Donate Life Month, donate life, Touched By Transplant, transplants, kidney transplant, liver transplant, pancreas transplant, transplant costs, transplant medications, meds, paying for transplant

 Share your transplant story with us on Facebook and on Twitter.

Why Work With HelpHOPELive?

Why should you trust HelpHOPELive to support your medical fundraising efforts? This infographic explains why you can count on us.

HHL infographic final

 

If you have questions or feedback regarding this infographic, reach out to us on Twitter or on Facebook.

 

CEO David Bakelman Challenges NY Times Crowdfunding Article

This week, we covered a New York Times report indicating that many individuals are turning to crowdfunding to raise money for their medical expenses or associated financial burdens. In a letter submitted to the editors of The New York Times, HelpHOPELive CEO David Bakelman challenged the notion that crowdfunding platforms are a surefire avenue for medical fundraising. Here is David’s letter to The New York Times.


 

David Bakelman HelpHOPELive

Re: Managing Health Costs with Crowdfunding

Crowdfunding platforms present many concerns that often go overlooked, particularly when fundraising for health costs.

The first issue is accountability. Most crowdfunding platforms do not include a way to verify that funds raised are spent on a patient’s medical needs.

Second, taxes are an issue. Raising funds through a nonprofit organization can lead to tax deductions for donors and the funds can be issued tax free to patient beneficiaries. That’s not the case with many crowdfunding platforms.

Finally, crowdfunding for health costs can impact a patient’s eligibility for Medicaid and SSI. Crowdfunding donations are counted as assets when Medicaid eligibility is considered. The amount of “countable assets” you can have and still qualify for Medicaid is usually about $2,000. If a patient exceeds this relatively low limit, they could lose their access to Medicaid and have to pay even more.

Overall crowdfunding tends to be a one-time opportunity without long-term sustainability. For patients who have a transplant or are living with a catastrophic illness or injury, challenges associated with uncovered medical expenses last for a lifetime. For example: yearly costs related to a spinal cord injury can top $1 million.

David Bakelman is the chief executive officer of HelpHOPELive, a nonprofit organization that has helped raise over $100 million for over 7,000 patients and families affected by transplantation, catastrophic illness or injury.

HelpHOPELive (helphopelive.org)

Two Radnor Corporate Center, Suite 100

100 Matsonford Road

Radnor, PA 19087

800.642.8399

 

What do you think? Join the conversation on Facebook or on Twitter.

Crowdfunding Your Medical Expenses: 5 Myths

As The New York Times reported in January, many patients are turning to crowdfunding to raise money for major or unforeseen medical expenses. Crowdfunding sites are jumping on the bandwagon in droves, rapidly adding medical fundraising options to their existing rosters of services.

HelpHOPELive, medical, medical expenses, crowdfunding, fundraising, medical bills

At HelpHOPELive, we’ve been helping patients fundraise since 1983. As new digital fundraising options emerge, it’s important for all potential fundraisers to understand exactly how crowdfunding works. While crowdfunding looks like an easy way to raise money quickly, make sure you consider these factors before you dive in.


 

Myth 1: Donations to my cause will be protected.

Many modern crowdfunding platforms do not include a way for donors to verify that the money they donate will be spent on a patient’s medical costs. In fact, as Charity Navigator warns, some people routinely exploit crowdfunding sites and manipulate donors in order to misuse donations for their own purposes.

HelpHOPELive tracks and verifies all donations, but if you work with a crowdfunding platform, donors that you contact may feel justifiably uncertain about donating to a cause without any sort of guarantee that their contributions will be collected and utilized to cover legitimate expenses.

Myth 2: I can keep my Medicaid coverage.

Donations you receive through HelpHOPELive fundraising will never endanger your Medicaid coverage. If you work with a crowdfunding platform, however, you may risk losing your benefits.

When Medicaid eligibility is determined, donations you receive through a crowdfunding platform will be counted as assets. The limit for “countable assets” to qualify for Medicaid is only $2,000. In other words, if you net more than $2,000 in donations through a crowdfunding platform, you may lose your access to Medicaid and incur sky-high additional expenses for your treatment.

Myth 3: Donors will naturally donate additional funds over time.

You may believe that your only obligation is to set up a crowdfunding site and wait for the donations to roll in. In reality, as the New York Times reported, most donors will not give to the same cause multiple times unless they clearly understand the link between their donation and a particular outcome for a patient.

Successful fundraising is a long-term process, not a short-term frenzy. While crowdfunding sites may generate initial buzz, you will likely need to raise money for medical costs throughout your lifetime. Donors tend to be reluctant to donate multiple times to the same cause, but HelpHOPELive can help you to fundraise creatively to increase the chances of repeat donations.

Myth 4: Strangers will donate to my cause.

Crowdfunding platforms may make it seem like virtual strangers will readily donate to your cause once you sign on. In most cases, the vast majority of donations to your cause are going to come from people you already know.

You can spread the word by leveraging your existing social circles, including extended family members, community organizations, places of worship and other potential donation sources.

Myth 5: Crowdfunding is free.

No fundraising effort is entirely cost free. HelpHOPELive charges 5% for operational costs with a 2.65% credit card fee* as applicable and no additional per-transaction fees. Medical fundraising fees will differ by provider, and as The New York Observer reported in 2014, some fundraisers have been unpleasantly surprised by the operating costs and donation fees deducted by crowdfunding platforms. Be sure you understand the associated costs before you choose a network to rely on for fundraising.

GoFundMe: 7.9% charge + $0.30 transaction fee (in the U.S.)

GiveForward: 7.9% charge + $0.50 transaction fee

Fundly: 4.9% charge + 3% credit card fees

Indiegogo: 9% fee + third party processing fees of 3-5% (platform fee decreases to 4% only if you meet your fundraising goal)

Medical crowdfunding and HelpHOPELive

So what can I do to raise money? Fundraising through HelpHOPELive is the most secure and supported method for raising money to cover your medical expenses. You receive the full benefit of over three decades of fundraising expertise, and your donors can rest easy knowing that every dollar they donate will be tracked and allocated responsibly. To learn more about fundraising with HelpHOPELive, click here.

What do you think about crowdfunding for medical expenses? Join the conversation on Facebook or on Twitter.

 

* Effective October 1, 2016.

Crowdfunding goes mainstream, lacks long-term strategy many patients need

At HelpHOPELive, we are dedicated to staying informed and looking ahead for new trends that might be able to give our patients and their families a boost in efforts to raise funds to cover uninsured medical expenses. Crowdfunding isn’t exactly a new trend, but its growth in popularity has been eye-opening to say the least. Usually based online, a crowdfunding service allows people to ask for charitable donations to support their own personal cause. In 2012, the overall crowdfunding industry raised $2.7 billion worldwide, and that number continued to rise last year.[i] It’s still just a blip on the radar when compared to the approximately $300 billion raised by nonprofits in the U.S. alone, but some people are starting to raise concern about how crowdfunding affects traditional charities.

An article published by the New York Times this month took a close look at the issue, headlined, “The Effect Crowdfunding Has on Venerable Nonprofits Raises Concern.”[ii] We’re here to tell you we aren’t concerned, and there are two distinct reasons why – long-term fundraising and fiscal accountability.

It’s important to understand that all patients and their families face unique challenges that may not be fully covered by a template, one-time fundraising effort. Patients often face medical expenses for extended periods of time, and many crowdfunding sites impose donation deadlines and simply lack any long-term strategy. Our Fundraising Coordinators provide one-on-one consultation that allows us to develop personalized campaigns that are tailored to the needs and interests of each patient’s support network. We build enduring relationships with the people and communities we help and work hard to identify opportunities to keep communities engaged in supporting people in need over extended periods of time.

Our staff also manages all of the funds raised and pays bills directly, helping patients and their families focus more on their treatment and recovery. While crowdfunding sites offer a direct connection to a cause, there is no knowledgeable and experienced partner to ensure fiscal accountability. We ensure funds raised are used for their intended purpose, and we maintain one of the highest ratings for nonprofit fiscal responsibility and delivery of service to patients in need. Ninety-six cents of every dollar we raise is used for direct patient services. Each week we write more than 200 checks to cover patient expenses including costs for home modifications, accessible transportation, medications, and relocations.

We’ve raised more than $96 million to help more than 2,300 patients receive a transplant, and more than 800 people living with a catastrophic injury or illness restore their independence and quality of life. A 30-year track record of building successful community-based fundraising campaigns has led Charity Navigator, America’s largest independent evaluator of charities, to award HelpHOPELive 10 consecutive 4-star ratings for good governance, sound fiscal management, and commitment to accountability and transparency. You won’t find that type of experienced support on a crowdfunding site.

Uninsured and unexpected medical expenses will continue to be a major issue for many people who face serious health challenges, especially for people who need an organ transplant or experience a catastrophic injury or illness. In the years ahead we will continue to work to bring our services to more patient populations and position more people to support HelpHOPELive to help us expand our reach even further.


[i] Barnett, Chance. “Top 10 Crowdfunding Sites For Fundraising.” Forbes. May 8, 2013. http://www.forbes.com/sites/chancebarnett/2013/05/08/top-10-crowdfunding-sites-for-fundraising/.

[ii] Tugend, Alina. “The Effect Crowdfunding Has on Venerable Nonprofits Raises Concern.” The New York Times. February 7, 2014. http://www.nytimes.com/2014/02/08/your-money/crowdfundings-effect-on-venerable-nonprofits-raises-concern.html?_r=0.