Tag Archives: business

How You Can Step Up To Support A Family Facing A Medial Crisis

Donating to HelpHOPELive isn’t the only way to support a family facing the financial and emotional burdens associated with a transplant. Just ask Danielle Bailey, who has helped three HelpHOPELive clients plan bingo and poker fundraisers using her event planning experience. Learn why Danielle pours her time, energy and expertise into helping these families, and you’ll be inspired to do the same!

Danielle Bailey HelpHOPELive

Danielle, left, supports multiple HelpHOPELive families


How did you get involved in fundraising?


My first event was to help fundraise for a little girl with a double cochlear implant who was having trouble securing state funds to attend a school for children with hearing loss. I helped to plan a bingo event, since everyone has fun playing bingo and it’s a great way to raise money and have fun. We were able to raise $400 for her.

Since then, I have been involved with events raising funds for several causes, including autism awareness, cancer awareness, canine companions, and kids’ medical needs. As an AVON representative, in addition to helping plan fundraisers, I typically reserve a table at each fundraising event to show support and advertise my services and I donate raffle prizes.

Danielle Bailey HelpHOPELive

Danielle has engaged in fundraising for several nonprofit causes


How are you connected to the HelpHOPELive families you help?


[Former HelpHOPELive client] Mary Jo Lovely is my mother. She made the decision to donate my stepfather (Stephen Boyes)’ organs in 1998 when he suddenly passed away. She was diagnosed with COPD and was put on 24/7 oxygen at 42. She was put on the transplant waiting list and she received her first single lung transplant in July 2007. A year and a half later, swine flu hit our family and the disease immediately put my mother’s body into a state of rejection. She received her second lung transplant in June 2015.

Danielle Bailey HelpHOPELive

Danielle’s mother “received her second lung transplant in June 2015”

I met [HelpHOPELive client] Karlene Novotny in 1998 when she did my taxes. We clicked right away. She opened her own business which I followed for a few years before she became sick. I saw her name in a news article shared on Facebook and we got back in contact. I was shocked to learn how sick she was and how much she had gone through since we lost contact.

I first met Natalie Meyers in person on March 12, 2016 while I was hosting the bingo fundraiser in honor of Karlene. She had just started fundraising with HelpHOPELive a few days before the event. A co-worker shared her story with me and I reached out to her, contacted the local fire company and started the planning process to help her with a fundraising event. I invited her to the bingo fundraiser in honor of Karlene so that she could see how events were managed to better prepare herself for the event in her honor later this year.

Danielle Bailey HelpHOPELive

Flyer designed by HelpHOPELive for the upcoming event


What’s the hardest part about planning a fundraiser?


I give myself a good six months to plan everything to limit hurdles along the way. I send donation requests to local businesses, find vendors to set up at the event, make sure there is advertising via social media and flyers in local groceries stories where permitted, and so much more. The hardest part is waiting for the event to happen!

Danielle Bailey HelpHOPELive

This year, Danielle is expanding her wheelhouse to include poker events


What is the most satisfying part of planning a fundraiser?


There is so much that is fulfilling about fundraising. Being able to help someone in need gives you such an amazing feeling. The most satisfying part is seeing a room full of 200 people pulling together to help a single person. Seeing local businesses helping the community also makes you proud to be a part of it.

Danielle Bailey HelpHOPELive

Danielle loves ” seeing a room full of…people pulling together to help”

Knowing I helped make it all happen for a great cause gives me such a sense of accomplishment! I love helping where I am needed. The actual amount raised may not be like winning the lottery, but for these families, it’s close because of the tremendous impact. Every little bit counts.


Do you help because you expect these families to pay you back in the future?


No way. I do not expect anything from anyone that I help. I just do it to get the feeling of being able to help, and that is enough for me.


Can fundraising be both emotionally and financially significant?


After my mom had her first transplant, I realized how much everything related to the transplant was going to cost. When your family is stressing out about how they are going to pay for the transplant and the medications that will keep them alive, it can honestly tear them apart. That stress can affect the entire family and fundraising can make a difference.

I have referred people to HelpHOPELive for years. I love that the funds raised go directly to the individual’s medical needs and not into some CEO’s pocket!


What does the word HOPE mean to you?


HOPE is life! Every day we take advantage of the things we’re given. We were all dealt a certain hand in life; it is who we are and what will make us stronger. Help those who are less fortune, because someday you may be the one who needs help.

Danielle Bailey HelpHOPELive

“Someday you may be the one who needs help,” said Danielle


Like Danielle, you can make a difference for a family facing a medical crisis. Start a fundraising campaign with our nonprofit today at helphopelive.org. Learn how to help an existing HelpHOPELive family by calling 800.642.8399.

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.

HelpHOPELive Clients In The News September 2015

Our clients work hard to engage their communities in fundraising, and the media is taking notice! Here are three standout stories.


Wade Smith: 8-Year-Old Needs Transplant

Wade Smith, Wes Smith, fundraising, Williams Syndrome, illness, chronic illness, catastrophic illness, childhood illness, HelpHOPELive, genetic illness, transplant, transplant fundraising, fundraising for transplant

Wade Smith is an 8-year-old boy in Belington, West Virginia who has experienced more medical emergencies than most of us will ever face. Diagnosed with Williams Syndrome, a genetic condition that causes cardiovascular issues and developmental delays, Wade was born without a right hand. He underwent open heart surgery at 3 months old and was diagnosed with FSGS at age 4. Today he receives daily peritoneal dialysis treatments while he awaits a kidney transplant.

Wade’s story has moved local families and businesses, including the McDonald’s in Philippi, which has agreed to donate 50 cents from every small fry order to HelpHOPELive in Wayne’s honor every Sunday throughout October. (Philippi McDonald’s helping boy with medical expenses)


Sarah Carr: Selfless Mom Seeks Accessible Van

Sarah Carr, Carol Amore, fundraising, fundraising for illness, catastrophic illness, chronic illness, disability, caregiver, awareness, HelpHOPELive

Carol Amore of Beverly, Massachusetts has been the primary caregiver for her daughter, Sarah Carr, for 33 years. Sarah is unable to walk or talk and has been enduring debilitating seizures since she was 5 months old. Now 60, Carol is fundraising for a wheelchair-accessible van that would ease the burden of transporting Sarah to her daily activities and specialty medical appointments.

Carol credits Sarah’s life with teaching her about patience, strength and unyielding compassion. (Beverly family seeks help acquiring handicap van)


August Murphy: 5K Run for Lungs Honors CF Fighter

August Murphy, 5k Run for Lungs, 5k, run, running, marathon, training, marathon training, coach, marathon coach, fitness, health, gym, workout, health, HelpHOPELive, CF, cystic fibrosis

August Murphy will run her first nonstop mile on September 13 at the 5K Run for Lungs event in Portland, Maine. Diagnosed with the genetic disease cystic fibrosis at 4 months, August is fundraising with HelpHOPELive for the double lung transplant she’ll one day need. August’s trainer, Brian Ligotti, plans to run alongside her every step of the way, ready to provide oxygen from a tank if August needs it to finish the race.

August and her medical team hope that fundraising now will limit the amount of additional stress placed on August as she grows stronger in preparation for a transplant. (Maine woman will run for a new set of lungs)


Want your HelpHOPELive Campaign to make headlines? Reach out to your Fundraising Coordinator for assistance with press releases and outreach.