Tag Archives: In The News

Feeling “Blessed,” Raising Thousands, and Finding Hope: Our Clients in the News

Just a few months into 2017, Help Hope Live clients are getting their stories featured in news outlets across the nation. Here are three standout stories of hope.


Rachelle Ledbetter: Community Responds to Rare Diagnosis with Resounding Strength


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In 1968, Rachelle Ledbetter was the first child to be diagnosed with allergic bronchopulmonary aspergillosis (ABPA), a chronic condition characterized by an exaggerated response of the immune system to the fungus Aspergillus. By adulthood, her hypersensitivity to environmental allergens had developed into a secondary infection that would necessitate a double lung transplant.

Rachelle is the former owner of the Sequoia Sentinel weekly newspaper. Out of respect for her editorial legacy, the Kawaeah Commonwealth, a more recent incarnation of the Sentinel, published in-depth coverage of Rachelle’s medical journey, her “upbeat and positive” outlook, and her plans for a community-driven Help Hope Live fundraiser.

We learned in March that the Spaghetti Feed raised a whopping $8,880 for the Help Hope Live Southwest Lung Transplant Fund in honor of Rachelle. “Apparently, the food ran out after serving 300 meals,” Rachelle wrote in an update on her Help Hope Live campaign page, “and yet you kept coming!” (Rachelle’s Lifetime ‘Journey to New Lungs’)


Michael Thor: Returning Home and Rekindling Hope After a Life-Changing Injury


Michael Thor Help Hope Live

Michael Thor with his wife and caregiver

In November 2015, Michael Thor was hit by a car while riding his motorcycle. He sustained a C2 spinal cord injury. At the time, he was in the process of pursuing one of his lifelong dreams: opening a restaurant with a good friend. The accident put Michael’s restaurant plans and the rest of his passions on hold as he and his family adjusted to his new life with quadriplegia.

After a year and a half of out-of-state intensive therapy, and just a few months after its grand opening, Michael was finally able to return home to see his restaurant in action. Tears filled his eyes as he witnessed how his business partner and staff members had come together to turn their shared vision into reality. “I could not be more proud,” said Michael.

A fundraiser held at Michael’s restaurant kicked off fundraising efforts for the Help Hope Live Southeast Spinal Cord Injury Fund to support ongoing rehabilitation. “I can tell that Mike has been rejuvenated,” wife and caregiver, Sarah, said in an update. “It was a really big morale boost for him to get back home. We were able to raise around $6,000. We truly can’t thank you enough.” (Restaurant Holds Fundraiser for Paralyzed Raleigh Chef)


Kimberly Grossman: Feeling “Blessed” as Faith Community Steps Up to Help


Kimberly Grossman Help Hope Live

Kimberly Grossman with her twins

Though she’s fighting chronic kidney disease, Kimberly Grossman considers herself blessed. Kimberly was diagnosed with end-stage renal disease in her twenties based on symptoms that had been following her around since she was just three months old. Kimberly’s strong connection to a faith-based community in her area provided the starting point for her fundraising campaign.

A spaghetti dinner fundraiser for the Help Hope Live South-Central Kidney Transplant Fund became an emotional lifeline as Kimberly met with friends and neighbors who showed that they cared about her. She and her 5-year-old twins are lifetime church members. “We wanted to do what Jesus tells us to do and help as much as we could,” explained Kimberly’s pastor.

Kimberly “fought back tears” as she reflected on her gratitude for community support. She advised others facing a transplant to “find as many ways as possible to fundraise. There are lots of people wanting to help.” (Spaghetti Dinner Fundraising for Woman in Need of Kidney Transplant)


Want your campaign to get featured in the news, too? Reach out to your Fundraising Coordinator today to receive media outreach support. 

Gamers, Rejoice! New Science Says Video Games Improve Wellness

In 2015, a group of gamers played The Legend of Zelda for 150 hours straight to raise money for our nonprofit. Their efforts made a significant impact in the lives of our clients and their families. While Zeldathon Hope was raising over $250,000 for charity, the marathon was also raising an interesting question: are video games inherently damaging to health and wellness?

Pokemon GO

Are video games helpful or harmful to our health?

Though some interactive games like Pokémon GO may be an exception, don’t video games basically require participants to be sedentary and isolated? As reporter Martha Clement Rochford put it, “The good news for gamers is that science disagrees.” Here are 5 ways that video games can promote physical and psychological wellbeing based on recent scientific research.


Video Games Enhance Our Reaction Times And Precision


Researchers at the University of Rochester recently concluded that playing an action-based video game daily “has a beneficial effect” on players’ brains. Engaging in a stimulating gaming experience for 30 to 40 minutes per day can improve eyesight, reaction times, mental rotation capacity and the player’s ability to move efficiently from one task to the next. Researchers concluded that if games released in the future are planned and developed specifically for people with chronic conditions, they “can help patients with chronic illness, anxiety and pain management” by encouraging healthy cognitive development and greater physical strength and dexterity.

Call of Duty

Action games “generated a moderate helpful effect on the overall cognition”

Other recent studies have corroborated those claims, finding that “action games generated a moderate helpful effect on the overall cognition.” Action games like Call of Duty help to develop “fast and precise responses” and “may produce structural changes in the brain“ by encouraging greater neural plasticity, particularly in young adults whose brains are still developing. Greater neural plasticity means an enhanced ability to learn and remember new information, adapt to change or react quickly to new circumstances and challenges.


Video Games Help Us Study And Fight Cognitive Decline


A trial in the United Kingdom is studying how Parkinson’s disease impacts cognition. The twist? Researchers will be using “a scientifically-designed video game as a non-invasive medical device.” The game will be specialized based on each participant’s unique mental processing and memory storage challenges and will offer “holistic training” to improve memory, processing speed, function and attention.

Link Zelda

New games could be used “as a non-invasive medical device” for cognitive training

For now, the initiative will focus exclusively on testing the potential for video games to improve life for people living with Parkinson’s disease, but the results could influence how medical professionals assess and treat multiple cognitive conditions, including traumatic brain injuries, PTSD and “cognitive deficit caused by cancer.”


Video Games Can Be A Physical Rehabilitation Tool


“When I was at Rusk Rehab at NYU Langone,” explains HelpHOPELive client Nicole Seefeldt, “I saw the hospital-based rehab center using Wii Fit and Wii Sport to rehab certain skills in their patients at all age groups. It inspired me to get one because I saw that patients were not only enjoying it but receiving benefits from it.

Wii

Nicole saw Wii games used as tools for hospital-based rehabilitation

Nicole also believes apps can help encourage people to engage with physical therapy and get in touch with their health in a way that “is a lot more dynamic than just sitting in a chair with weights. Several systems also have brain games which are good to play for cognitive development, too.”


Video Games Have Meaningful Psychological Benefits  


Gaming doesn’t just physically alter and improve your cognitive capacity. According to studies on the psychology of gaming, “gamers can address their fundamental psychological needs through playing games.” As cyberpsychologist Berni Good concluded, gaming can help players to feel competent as they master each level and challenge, which improves their psychological wellbeing. Whether through a multiplayer online game, couch co-op or a little social media gloating, gaming can also help players to “relate to others in a meaningful way” as they collaborate on game challenges and share their experiences with others.

Zelda coop

Personal achievements and co-op play can improve psychological wellbeing

Don’t think these results only apply to massive multiplayer action wars or shoot-‘em-up thrillers. Gaming can also tap into “the idea that we need to be masters of our own destiny,” encouraging players to feel like they are making independent choices that are reflected in real-time changes to the game environment or questlines.

Zeldathon

Moffit (center) believes gaming for good can lead to emotional fulfillment

Combine video games with good deeds, like the Zeldathon Hope team, and you have a recipe for social and emotional fulfillment. “We’re creating something more than just a marathon,” explained Zeldathon founder Matthew Moffit. “We’re a real community, dedicated to forces of good. We like to think that we’re working to defeat the evils of the world through our marathon.”


Video Games Help Us Track And Treat Chronic Symptoms


Microsoft Research in Cambridge is tapping into the Xbox Kinect tactile gaming platform to support people living with multiple sclerosis. The console’s motion sensor system will be integral to new research on the effectiveness of MS treatments and the progression of symptoms. Through Kinect-compatible tests, people with MS will be asked to move or touch certain parts of their body and researchers will use a rating scale to track the strength of MS symptoms that affect mobility.

kinect

The Xbox Kinect has been used to track MS symptoms

A recent study found that cognitive training video games developed by neuroscientists could help people with MS to strengthen their neural connections to promote cognitive wellness. MS can impact the thalamus in the center of the brain, leading to the cognitive dysfunction or “brain fog” experience in people living with the condition.

Study participants “had significant increases in thalamic functional connectivity” after participating. One researcher concluded that “video games can promote brain plasticity and can aid in cognitive rehabilitation” for people experiencing cognitive dysfunction due to MS or other brain-disrupting chronic conditions. Researchers hope to use their findings to add to existing rehabilitation pathways for people with MS.


A Bright Future For Gaming-Based Research And Treatment 


Video game platforms and interfaces continue to evolve year after year, and researchers are chomping at the bit to assess their health and wellness applications. In fact, though virtual reality has just barely reached the consumer market, it is already being used to test and diagnose individuals with cognition and memory challenges. It’s good news across the board for gamers, who now have a tangible way to defend their digital obsessions with legitimate scientific research.

virtual reality gaming

Virtual reality is already being used to diagnose some cognition issues

Think these findings supersede the need for balance and moderation in gaming? “When we think about the effect of video games on the brain, it’s very similar to the effect of wine on health,” explained Dr. Daphne Bavelier in a TED Talk. “There are some very poor uses of wine. There are some very poor uses of video games.” But, as new research proves, “when consumed in reasonable doses,” video games can be a beneficial tool for managing symptoms, improving cognition and building positive psychological foundations.


Are you a gamer living with a chronic condition or disability? We’d love to hear about your experiences with gaming and wellness on Facebook.

5 Major Transplant Headlines You Missed

Here are some of the milestones and newsbreaks that have touched transplant families since this time last year.


5. Scientists 3D Print Human Body Parts


After a decade of research, scientists managed to engineer functional human body parts including bones, muscles and ears.

Lab grown organ

Will lab-grown organs replace donor organs? Photo via source.

Quote: “This technology could potentially be used to print living tissue and organ structures for surgical implantation.”

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4. Total Artificial Heart Could Eliminate Transplants


After a 60-year break, the total artificial heart (TAH) is being revisited as a potential permanent implant that would eliminate the need for heart transplants.

Total Artificial Heart

Diagram of a Total Artificial Heart. Image via UCLA.

Quote: “There are people that are desperate for this technology…I think it has the potential to save a lot of people’s lives”

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3. Ending The Waiting List…In Our Time?


In addition to lab-grown organs, bioprinting and cold storage could dramatically improve circumstances for transplant candidates on the waiting list.

bioprinting

Will bioprinting and cold storage end the waiting list? Image via source.

Quote: “We can expect the first fully engineered bioidentical no-immune-suppression-needed organ transplant in humans within 10 years.”

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2. Have Money, Will Transplant


A study indicates that wealthy people are more likely to secure a transplant and less likely to die while waiting for one.

Money organ transplant

Can money get you on a shorter waiting list? Image via source.

Quote: “It takes money and knowledge…traveling can make a huge difference in how quickly you get an organ.”

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1. Incompatible Donors Can Donate A Kidney


Donors may now be able to give a kidney to an incompatible recipient through a process called desensitization.

incompatible donors

Incompatible kidney donation is now possible. Image via source.

Quote: “Desensitization…can cost about $30,000 [but] dialysis would rack up a higher price tag and a considerably lower quality of life.”

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Did a health headline touch your family this year? Reach out to us on Facebook and share the stories that moved you.

HelpHOPELive Clients In The News March 2016

Spring is a season of hope, renewal and rebirth. For these three clients, spring represents a chance to enjoy a healthier, happier future with help from community fundraising.


Scott Truran: Veteran Sets Sights On Treatment For Debilitating MS


Thirty-nine-year-old Scott Truran was diagnosed with a progressive form of multiple sclerosis in 2011. Before the diagnosis, the former Marine was very active and prioritized staying in shape. Today, he has to rely on a cane to walk and his right side feels like it’s been “dipped in concrete,” he explained.

Scott Truran HelpHOPELive veteran MS

Scott will continue to lose mobility as his MS progresses

Scott will continue to lose mobility as his MS progresses. It’s likely he will eventually need a wheelchair to get around. Scott and his family learned about a treatment option for MS that may help to limit Scott’s mobility losses. The treatment involves wiping out his immune system with low-dose chemotherapy, then using stem cells, previously harvested from his blood, to rebuild a new immune system. This treatment option is only available as a clinical trial in the United States. Scott and his family will need to raise $80,000 to receive the treatment in Mexico as well as additional funds to offset the out-of-pocket costs of travel and temporary relocation for Scott and a caregiver.

Scott Truran HelpHOPELive veteran MS

Scott is appealing to his community for support for his treatment goals

“The money is the biggest obstacle,” Scott explained, “but it’s a small price to pay for a chance to slow [the] disease or stop it entirely.” Scott will fundraise with HelpHOPELive to maximize his chances of securing the funds he needs to potentially halt or reverse the progression of his MS. (Veteran’s family asking for help with progressive form of multiple sclerosis)


Theo St. Francis: Young Man With Spinal Cord Injury Plans “His Comeback”


In 2013 while taking part in a pre-orientation at MIT, Theo broke his C6 vertebra in a diving accident. Theo became paralyzed from the chest down with some shoulder and arm movement and limited finger dexterity. Doctors told Theo he would likely never walk again.

Theo St. Francis HelpHOPELive

“I am done managing. I am overcoming.”

As the Sonoma Index-Tribune reported, Theo “set his brilliant mind toward devising a plan for his comeback.” In December 2015, Theo reached a major milestone when he was able to sit on a barstool during a celebration with friends. He tries to spend time away from his manual wheelchair, pursuing activities that “align with what my goals are,” from driving an adaptive car to biking, skiing, surfing, kayaking and traveling.

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Fundraising with HelpHOPELive is allowing Theo to pursue the intensive spinal cord injury therapies he credits with helping him improve his mobility over time. Theo emphasizes the word “recovery” and spends his days looking forward. “I put the impossible in quotes,” he explained. “I am done managing. I am overcoming.” (Theo St. Francis overcoming odds to regain mobility)


Michael Mahan: Community Supports Man Facing Intestine Transplant


In 2012, what Michael Mahan and his family believed to be an upset stomach turned out to be a dangerously twisted small intestine. Since doctors removed the failing organ, every 6-8 weeks, Michael ends up back in the hospital with septic blood. With no small intestine to help his body process food, the husband and father of three relies entirely on intravenous nutrition as he waits for an intestine transplant.

Michael’s priority today is raising funds to cover the out-of-pocket expenses associated with an intestine transplant and follow-up care. He may need to spend up to 10 months in a transplant center after the procedure, and the cost must be paid up front before he can be put on the transplant waiting list.

Michael Mahan HelpHOPELive

Michael is a husband and father of three

Fundraising with HelpHOPELive is helping Michael to secure the funds he needs to get the transplant, but it’s also connecting his family with their supportive community. “We’re just so excited to do everything we can to help him out,” said local resident Jon Rosenlund. “He is a wonderful man and a great father. It’s an honor to help him, but we need a lot of help.” (Fundraiser to benefit man awaiting intestinal transplant)


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