Tag Archives: Who We’ve Helped

How To Save A Life In 30 Seconds

Blood cancers like leukemia kill more children in America than any other disease. As part of the largest network of bone marrow donor centers in the United States, Delete Blood Cancer has registered more than 600,000 donors and provided over 2,000 bone marrow transplants to patients in need. We spoke to Desirée Chavis, the organization’s communications specialist, about making an impact through bone marrow donation.


What is Delete Blood Cancer’s mission?


We seek to register as many eligible and committed bone marrow donors in the U.S. as possible. We are also an international organization with a presence in 5 countries. Part of our mission is also to bust the myths surrounding donation and try to empower others to be advocates for donation themselves. We want people to know that it takes just 30 seconds to swab your cheeks and register as a potential donor. You could change or even save someone’s life!

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What would you say if someone asked, why should I become a bone marrow donor?


  1. It’s an amazing and unique experience.
  2. Your bone marrow will replenish itself.
  3. Receiving bone marrow can be lifesaving for patients. Without a donor, many face extreme medical, financial and emotional hurdles–you are giving them a precious gift.
  4. Minorities and mixed race recipients can have a harder time finding a donor, so your contribution can really make a difference in their lives.
Nick Karavite HelpHOPELive

HelpHOPELive client Nick Karavite received a lifesaving bone marrow transplant.


What are some of the most common misconceptions about becoming a bone marrow donor?


The biggest misconception is around the methods of donation and the pain involved in donating. Whether you donate through the peripheral blood stem cell method (PBSC) or the surgical method, you’re back in action very quickly. They are both same-day outpatient procedures.

PBSC is used for 75% of donations. With this method, you receive a daily injection of filgrastim 4 days pre-donation to increase the number of blood stem cells in your body, so you may feel like you have the flu for a few days. During the several hour donation, a machine takes blood from one arm, removes the blood stem cells and returns the blood to the other arm. You can use your iPad, read magazines or watch TV while you donate.

A Delete Blood Cancer donates via PBSC

A PBSC donation in progress.

Surgical donation is used in the other 25% of cases. In these cases, surgeons go in with a special syringe (to extract bone marrow) while you are under anesthesia. On average, it takes a little over an hour and you don’t feel anything during the procedure. You can still leave on the same day, making sure that you limit strenuous activity. Most donors describe feeling slightly tender or bruised at the injection site.


Has your work allowed you to hear stories from patients whose lives have been changed by donation?


Our main mission is to save lives; we encounter many rewarding moments while working toward that! Something amazing about our work is that a donor in any country we serve can fill the need for a patient outside of those borders. Up to one year (or two in some places) after transplant, a donor and recipient cannot have direct contact, but after that, if the desire is mutual, they can begin direct contact with each other and even plan to meet.

I remember one incredible story about a recipient in Texas, Larry, and his donor in Germany, Johann. A year after Larry’s transplant, Johann came to visit him in Texas! Larry brought up an amazing point: he and Johann now share DNA. They were basically “brothers” because of Johann’s decision to donate. Larry was so excited to meet him, and Johann was welcomed into a new family. He gained that family by saving a life.

wilson donor

Larry and Johann were linked by Johann’s lifesaving donation. Source: Houston Chronicle


Go to deletebloodcancer.org to register to be a donor now. Share your donation or bone marrow transplant stories with us on Facebook and on Twitter

Learning To Adapt: How A Business Owner Supports His Wife After Injury

In honor of National Family Caregivers Month this November, we’re profiling individuals who play a key role in the care and happiness of their loved ones. In July of 2014, Kirby G. Smith was thrust into one of the most intense experiences of his life. Suria Nordin, then his fiancée, became paralyzed while vacationing with Kirby in Jamaica. By July of 2015, Kirby had founded SunKirb Ideas, a game-changing “smart home” installation and management company.

Kirby hopes to offer ease, efficiency and manageable overhead costs to families coping with a disability or injury. We picked Kirby’s brain to find out how smart home tech could revolutionize daily life for American families.

Kirby Smith and Suria Nordin HelpHOPELive injury spinal cord injury wheelchair SunKirb Ideas

Suria and Kirby in their neighborhood. Source: Wall Street Journal


After your wife’s injury, what modifications were needed to create a supportive home environment?


We had to modify multiple elements of our house, including our home entrances, the heights of our light switches, the bathroom configuration, our flooring and our emergency response options.


How did you begin to discover the benefits of smart home tech?


When Suria was injured, I wasn’t very motivated to seek out adaptive equipment because of the exorbitant prices for purchase and installation. As a result, I started to take a closer look at regular consumer products. It turned out that MANY of these products were already outfitted with adaptive technologies, but those features were not well-advertised.

Kirby Smith Suria Nordin HelpHOPELive home

Kirby found creative ways to make life easier for Suria. Source: Wall Street Journal

When it comes to adapting for disabilities, people tend to just purchase the tech without looking into the value. I realized that instead of asking families to look for expensive adaptive equipment, I could help them to adapt existing equipment for their needs. I realized this was really a gap in the market: services from a company that understands disability and aging directly.


What kind of cost-effective conversions did you discover?


The first four months after Suria was injured were challenging. We had no one to turn to to discuss life after injury when it came down to the nuts and bolts of home modification. In one instance, I searched for a piece of technology that would allow Suria to turn on the television with her voice. A vendor presented me a customized voice-activated device that would cost us $6,000. To me, that price was outrageous. Instead of making that purchase, I picked up a $400 Xbox console, which has built-in audio recognition that can completely control a television set, including sites such as Netflix and cable box or TiVo DVRs.

xbox

An Xbox can be used in place of a $6,000 modification.

The second piece of the puzzle was making physical adaptations without relying on installation services. Every adaptive tech business sold its product aggressively, but no one showed you how to adapt your home without paying a professional to do so. Different vendors handled each piece of the home, from the lights to the doors to the television, with huge service markups attached to each. The vendors pushed their own product and didn’t work on continuity. We would have had to find our own tech-savvy contractor to adapt the house on a physical level. Learning how to do that on my own gave me the experience I needed to help others do the same without paying exorbitant installation fees.


Why don’t businesses advertise adaptive uses for consumer products?


The average person doesn’t even think about these considerations. In Xbox’s case, the company wants to appeal to gamers primarily. Businesses don’t want to lose their core markets, so they tend to shy away from using language like ‘adaptable’ or ‘adaptive’ because they are so afraid of alienating their core consumers.

game marketing Battlefield

Afraid of alienating core consumers, most companies don’t advertise accessibility.


How did your professional background inform your business?


My tech background as a Senior VP of IT helped me to identify what was a good deal and what was an outrageous proposition. We had to design portions of our systems to accommodate persons with disabilities. I’ve been aware of that [need] throughout my career.


How can intelligent tech impact the lives of families coping with an injury?


Smart tech can provide cost savings while improving safety and comfort. A smart house can monitor energy usage and save you money while you’re away from home – for example, the system will adjust the temperature to save energy if it senses that you are away from your home and then, as it learns your schedule, it will bring the temperature back to comfort levels before you arrive. Our home tech learns Suria’s patterns and adapts to them. We have smart smoke detectors that pick up smoke and CO2, but the alarms can identify both the exact location of the issue AND the degree of emergency. If someone burns the toast and there is smoke in the kitchen, the device will inform us of the issue but will also note that it doesn’t pose an immediate threat to our safety. The sensors also detect motion and can alert us if we are away and there is movement in the house. They can also tell the thermostat we’re out, and lower energy levels to save power.

smart home

Smart tech can save users money and improve safety.


Can smart homes help caregivers, too?


As a caregiver, I use our home features as much as Suria does! Technology streamlines and simplifies everything. Caregivers can monitor their homes and their loved ones and keep in constant contact, especially in case of emergencies. When everything is connected, it becomes easier for EVERY member of the family to live a fulfilling life.


Are there benefits to using smart tech beyond physical disability support?


It’s nice to have equipment that assists you but isn’t stigmatizing. There is a ‘cool’ factor to a lot of this technology that supersedes the disabled label – in fact, my first SunKirb Ideas clients are not disabled. That’s what’s so powerful about connected home technology: it transcends traditional labels and limitations. I truly think we’re on the cusp of very affordable technology that can change lives, and I’m proud to be on the forefront of that.

smart house family

Smart tech can transcend the ‘disability’ label to appeal to everyone.


Why not expand your business to the general market?


After what I went through with Suria, serving families who are coping with disabilities is my passion and where my heart lies. I’m not speaking from theory when I address consumers – I’ve lived it, and that gives me a perspective I can share with others. By testing things with Suria, I was able to determine what would work for others with similar situations or even completely different concerns (blindness, for instance). I’m not in this to form a gigantic company – I am looking for fulfillment and the ability to provide a good service. I want to be able to walk away feeling like the money I made is supporting a worthy cause.


Like what you’re hearing? Share your thoughts on caregiving after injury, smart homes and disability-friendly technology with us on Twitter.

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!


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