Category Archives: About HelpHOPELive

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

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

Jeff broke his neck and became a C6 quadriplegic.

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

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

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

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

Jeff Harris HelpHOPELive Curl-a-Thon

Fundraising has helped Jeff to pursue independence and mobility

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.

Staff Spotlight: Meet Kelly Bertolette

If you have ever called the HelpHOPELive office, chances are you’ve spoken with Kelly, one of our patient support representatives. Let’s find out what keeps Kelly smiling day after day!

Kelly Bertolette HelpHOPELive


How did you come to work at HelpHOPELive?


I was looking for a position at a nonprofit organization where I could make a difference and contribute to something good. When I saw the posting for my current position, it seemed like the perfect way to use my skills and experience to serve an organization that I would be proud to work for and represent.


What’s your favorite thing about working at HelpHOPELive?


I love speaking with the individuals and families we serve and hearing their good news, whether they’ve received a transplant, achieved a mobility milestone, or held a successful fundraiser. Their positivity is infectious and those calls always brighten my day. I especially love when I get an opportunity to attend a local client’s fundraising events. Meeting a client in person and getting to know his or her family and friends is so fun! Another thing I love about my position here is getting the opportunity to work alongside a really special team.


What gives you HOPE?


Seeing communities come together in support of someone who is going through a difficult time gives me hope. It’s inspirational. I love when I hear clients say, “I never knew how many people cared about me until I started fundraising.” Fundraising not only helps families financially, but also helps them to stay positive and strong throughout their journey.


Learn more about our compassionate team of fundraising experts at helphopelive.org.

Who Manages HelpHOPELive’s Social Media?

Emily Webb is the PR and Social Media Coordinator for HelpHOPELive. She’s the one behind the Facebook, Twitter, Instagram and Google+ posts you love to “like”!

Emily Webb Cole Sydnor HelpHOPELive

Emily with our client Cole Sydnor


How did you come to work at HelpHOPELive?


I worked as the managing editor of a digital content marketing startup in Philadelphia.  Even though I enjoyed my job, when it came time to move on, I realized that my heart was leading me to nonprofit work. I started looking for a job and came across HelpHOPELive by chance. I am so glad I did!


What’s your favorite thing about working here?


Most of the families I work with every day are facing a load that I can’t even begin to personally understand. I like to think that if nothing else brings them hope or good news in a day, their phone call to me or to HelpHOPELive can be a brief period of time in which they know they will experience patience and compassion. My favorite part of my job is being able to help make people’s lives easier in a small but often meaningful way.


What gives you HOPE?


Individual stories give me HOPE, like Paul Mustol’s story. Paul and his family are faced with several potentially terrifying factors beyond their control, including mobility loss, financial challenges and the potential for Paul to pass away as a young adult. Paul’s mother, Anna, and her family are instilling a love of life and a love of service into Paul at a young age so that he can live a meaningful life regardless of how long it is. I look at Paul’s picture to remind me how beautiful life is.


Learn more about our staff members and see behind-the-scenes pics by following HelpHOPELive on Instagram!

How Your Donation Will Support Our Nonprofit Mission

In addition to helping us to provide emergency assistance grants, your contribution will help fuel our mission to support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses. Learn why that matters so much to families across the country.

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How HelpHOPELive Serves Families


Roughly 20% of families who have health insurance still struggle to cover their medical expenses. We understand that a medical crisis can create a severe emotional, physical and financial burden for any family. Community support, where relatives, friends, neighbors and co-workers get involved in fundraising efforts, is often a vital untapped resource that can help people pay for uncovered medical expenses.

When a family chooses to fundraise with HelpHOPELive, they benefit from:

  • An online Campaign Page where they can ask friends and family for life-changing donations and receive messages of support
  • One-on-one consultation from one of our expert Fundraising Coordinators to help them develop a personalized campaign that is tailored to the needs and interests of the patient and their support network.
  • Custom fundraising materials like event flyers, awareness materials and press releases
  • The opportunity to earn Challenge Grants by reaching fundraising milestones
  • Our nonprofit status: fundraising support that does not jeopardize their medical coverage status (Medicaid, SSI)and the opportunity for their community members to make tax deductible contributions
  • Expert fundraising advice backed by more than 30 years of experience building successful campaigns

For many clients struggling with life-changing conditions, we are more than just a fundraising resource: we are a lifeline set apart by our compassion and expertise. In fact, in a 2014 survey, 92% of respondents rated our customer service as Excellent, Very Good or Good and 91% said they would recommend HelpHOPELive to another family or had already done so.


What Clients Say About Us


“We have had numerous experiences with nonprofit organizations and HelpHOPELive has been the best we have ever worked with. Compassionate, always ready to support and help, they have been rock steady in their devotion to those in need.”

The name HelpHOPELive says it all.”

“HelpHOPELive is a huge relief to me during a very stressful time.”

If it were not for HelpHOPELive, my son would never have received his transplant.

“Tangible financial support has helped immensely, by lifting a burden that would otherwise be hovering and weighing over us”

Many families would not be able to cover their vital medical expenses without fundraising. Your donations will help us to continue providing key fundraising support to families that depend on it.


We Still Need Your Help To Spread Hope!


We rely on contributors like you to help us continue serving families coping with the financial burden of uncovered medical expenses. Find out how you can keep hope alive for these families with your donation and support.

Fall Transplant News: Conferences and Video Announcement!

We are proud to support candidates, recipients and their families as they navigate transplant financial concerns. Here are two exciting pieces of fall transplant news from the HelpHOPELive team.


‘Tis the season for fall conferences! HelpHOPELive leadership represented our organization at three important professional gatherings:

2015 Transplant Financial Coordinators Association Workshop

Location: St. Louis, Missouri

Highlights:

  • Understanding national Centers of Excellence requirements for transplantation
  • How Medicare coverage serves transplant needs
  • Panel discussion: top resources for transplant financial aid (with HelpHOPELive CEO David Bakelman)

Pics:

David Bakelman at TFCA conference

Our CEO prepares to address transplant financial coordinators.

HelpHOPELive Co-Director of Fundraising and Patient Services Rebecca Carr.

Co-Director of Fundraising and Patient Services Rebecca Carr showcases HelpHOPELive resources.


29th Annual Society for Transplant Social Workers International Conference 

Location: Columbus, Ohio

Highlights:

  • A firsthand, start-to-finish look at a recipient’s kidney/pancreas transplant journey
  • The ethics of altruistic kidney donation and inmate organ donation
  • Discussion: how to fundraise effectively for a transplant (with HelpHOPELive CEO David Bakelman)

Pics:

HelpHOPELive STSW Conference 2015

HelpHOPELive’s CEO David Bakelman (back left) and Co-Director of Fundraising and Patient Services Joni Henderson (back right), pose with the social workers who received scholarships from HelpHOPELive to attend  this year’s STSW conference.

HelpHOPELive Co-Director of Patient Services Joni Henderson.

HelpHOPELive Co-Director of Fundraising and Patient Services Joni Henderson offers information on our services.

HelpHOPELive CEO David Bakelman STSW

Our CEO on the STSW 2015 discussion panel.


21st Annual “The Practice of Transplant Administration” Workshop

Location: San Diego, California

Highlights:

  • Our first year engaging with professionals at this important gathering!
  • Modern tools for tracking and analyzing transplant data
  • Transplant financial management, including Medicare reimbursement and reducing overhead costs

Congrats to the winners of our conference raffles who won gift cards from HelpHOPELive: Teressa Lawrence, a financial coordinator at NYP-Weill Cornell Medical Center (New York); and Deborah G. Evans, a social worker at St. Vincent Hospital (Indiana).


New Transplant Video Announcement!

With the support of Philadelphia digital media agency Allied Pixel, HelpHOPELive will be releasing an incredible new video to help transplant families understand how our nonprofit can support their financial needs.

Sneak Preview:

We interviewed HelpHOPELive patient and heart transplant recipient Leslie Sorg along with her brother, son and sister to learn how fundraising impacted her journey. Here’s a quote from Leslie:

“This is not something you do alone. I was unaware how expensive [a] transplant would be. I was shocked. I was totally and completely resistant to fundraising. Then my social worker told me about HelpHOPELive. I couldn’t stand the idea of asking people for money…Honestly, it was probably one of the best things I’ve ever done. They money was so appreciated [and] my heart is a rock star because of it! There was an astronomical amount of community support and love, and all because I reached out. My family, my friends and my co-workers became the strength that I needed.”

Leslie Sorg transplant HelpHOPELive

Leslie spoke about the role HelpHOPELive played in her transplant preparations and recovery.

Leslie Sorg Allied Pixel transplant HelpHOPELive

Leslie makes her video debut.

Bill Haley and the Allied Pixel team transplant video for HelpHOPELive

Bill Haley and the Allied Pixel team.

HelpHOPELive transplant video Allied Pixel

Leslie’s sister, Michele, gets camera-ready.

You can find an additional behind-the-scenes video on our Instagram page.

The video will launch by 2016 – stay tuned!


Want transplant news in your inbox? Sign up for our e-newsletter and get fresh transplant fundraising news and tips each month!

Staff Spotlight: Meet Ashley “Peach” Brown

Ashley Brown, nicknamed Peach, is a HelpHOPELive Financial Assistant and one of the newest members of our team. We found out what makes her tick.

Ashley Brown Peach Brown financial assistant HelpHOPELive staff spotlight


How did you come to work at HelpHOPELive?


I wanted a more meaningful job where I could actually feel like I had helped someone or made a difference at the end of every work day.


What’s your favorite thing about working at HelpHOPELive?


I love seeing updates and photos from our patients through their online Campaign Pages and connecting with patients directly by phone. Hearing patient stories and finding out about successful transplants and other medical milestones really makes you appreciate your life so much more. You’re working for people who don’t have it as easy as you, and they’re working even harder every day just to live and thrive.

I also enjoy speaking with contributors to patient campaigns, because some people are donating their last pennies in the hopes that their contribution will help someone survive.


What gives you HOPE?


Random acts of kindness from strangers give me hope. They let me know that there are people who care in the world and not everybody is in it for themselves. If everybody cared about strangers the way they care about their own family and friends, the world would be a much better place.


Give Peach a shout out on our Facebook page! You can learn more about our team on our website.