Tag Archives: kidney disease

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. 

Voices of Hope: Celebrating Black History Month

February is Black History Month, an opportunity to delve into the unique challenges and triumphs experienced by African-Americans. Here are two client perspectives on coping with discrimination, holding onto hope and serving as a self-advocate for your health.


David A. Jeffers

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David (above, with his wife Yasmine and sons) became paralyzed while at the beach with his family in August 2011. His family began fundraising with HelpHOPELive a month later.


Have you personally experienced or witnessed discrimination?

I’ve experienced discrimination both as a result of being black and as a result of being disabled. I have been treated as uneducated and unintelligent. People often choose to talk to my wife instead of me and ignore me, even when I address them directly. Little do they know that the black guy in the wheelchair is an active father, husband and mechanical engineer who graduated with the third highest GPA in my major.


How have you served as your own advocate?

Honestly, I’ve had to fight for almost every service I’ve used and the assistance I’ve received, including public transportation, rehabilitation and making sure neighborhood amenities are accessible. I document my experiences on my blog. I would advise others who face a similar struggle not to take ‘No’ for an answer. You must be persistent. For several issues I encountered, it took months to find a resolution.


What does Black History Month mean to you?

I wish we didn’t need to have Black History Month. I wish the history books and school curriculums could reflect events as they happened with a reverence for all cultures, but until that happens, it will remain an important month to me and my family.


What do you associate with the word ‘hope’?

A catastrophic injury like mine is truly life-changing. I could have died. As a quad, your whole approach to life has to change. You gain a totally new perspective on life. Hope gives me the ability to survive and thrive. Without hope, me and my family would not be as healthy or happy as we are today. My wife and kids are my main motivation and they help me find hope.


David is currently fundraising for Lokomat training ($85 per hour) and exercise therapy ($35 per hour) to improve his mobility. He has noticed a drop in strength and energy level since he stopped therapy in June of 2015 due to financial constraints.


Alison Jones

Alison Jones and son Alerique Dariso

Alison (above, with son Alerique Dariso) was diagnosed with polycystic kidney disease (PKD) when she was seventeen. She is seeking a living kidney donor so she can receive a life-changing transplant. Alison and her son started fundraising with HelpHOPELive in June 2015.


Have you personally experienced or witnessed discrimination?

I have had to seek numerous medical opinions to get treatment. Organ transplantation was never included in potential treatment options as my kidney function declined. I had to initiate the conversation myself. After speaking with other African-Americans, the majority knew people who were on dialysis or had died on dialysis, but only a small percentage knew someone who had received a transplant. In comparison, when I speak with non-minorities, I often hear, “A friend of mine had a kidney transplant. You are going to be just fine.”

The most painful racism I have experienced: one Valentine’s Day while my son was enrolled in a private preschool, he drew a picture of his “valentine,” who had blonde hair. His teacher pulled him aside and told him he couldn’t have a blonde valentine. That incident shaped my parenting and I began to prepare my son for discrimination and teach him that no one can limit his choices in life.


Any advice for other people who are facing the challenges of PKD?

For anyone living with chronic kidney disease or PKD, I strongly suggest participating in a support group. My greatest life strategies have evolved during support group meetings. Speaking with others who are experiencing similar health experiences is therapeutic and helps you to avoid depression.


What does Black History Month mean to you?

Black History Month is a reminder that generations of people have overcome insurmountable obstacles through diligence and continuous effort. Black History Month reminds me that giving up is not an option.

African-Americans make up a minority within the general population, yet we face higher rates of hypertension, heart disease, diabetes and obesity. All of these conditions can lead to kidney failure. One of the reasons I am looking forward to receiving a kidney transplant is so I can teach and advocate for early kidney function testing and proactive health behaviors to change current health trends.


What do you associate with the word ‘hope’?

I am so thankful to all of my loved ones who have supported me during this journey. To me, hope is another day of breath and opportunity. Every time God gives me another breath, I want to make it count, and that is living hope. After my life, hope will be there for more generations to strive to reach their highest level of potential and opportunity.


Alison is fundraising for uncovered costs associated with her kidney transplant preparations, including the cost of a lifetime of post-transplant anti-rejection medications.

A 77-Year-Old Donates A Kidney To Save His Son

On October 15, 2015, 77-year-old Bill Graham, Sr. became the oldest living kidney donor ever recorded at the University of Maryland Medical Center as he donated a kidney to his son and HelpHOPELive client, Andy. The transplant was a lifesaving gift for Andy, who had been fighting end-stage renal disease since 2013.

Andy is described as a “kind and generous man” by his mother, Mary Lou. He and his family were blindsided two years ago when he was diagnosed with acute renal failure despite exhibiting no symptoms or sign of the diagnosis. The unknown autoimmune disease that deteriorated Andy’s kidneys required him to receive dialysis three days each week.

Andy Graham dialysis HelpHOPELive

Andy received dialysis weekly

Andy became unable to officiate high school football games, a pre-diagnosis passion, and he could no longer maintain his fulltime job as an auto industry manager. Within 2 years, even climbing stairs or walking short distances became a major challenge. Andy needed a miracle –and that’s when his father stepped in.

Andy Graham Bill Graham HelpHOPELive

Andy with his donor Bill and his dog Angel

77-year-old Bill Graham, Sr. offered to donate a kidney to save his son’s life. To become a viable living donor, Bill lost a whopping 53 pounds at the request of Andy’s transplant team. “The doctors were truly amazed at his good health,” said Mary Lou. “He was so happy to be able to give his son the gift of a new life. Surgery was a complete success and the guys are on the road to recovery.”

Andy Bill Graham HelpHOPELive

Bill Sr. and Andy are in good health

In a letter, Mary Lou thanked their generous friends and family members, who helped the transplant take place through their donations. With both donor and recipient now in good health, Andy and his family will still face multiple expenses related to the transplant, including expensive immunosuppressant medications that he will need to take for the rest of his life. Andy and his family continue to fundraise with HelpHOPELive to help offset those uninsured expenses and cover any unanticipated expenses that may arise.

Learn more about Andy and his transplant journey on his HelpHOPELive Campaign Page.

 

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.

 

Meet HOPE Award Honoree Jim Melwert

Each year at HelpHOPELive’s annual fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

This year, the HOPE award will go to KYW’s Jim Melwert for his selfless gift of life through living kidney donation.

Jim Melwert gold medal

We honor Jim Melwert for giving the gift of life.

In 2006, Jean DelMuto was struggling with the painful effects of polycystic kidney disease. Facing at least a 5-year wait for a kidney transplant, Jean’s health deteriorated so rapidly that her manager established an in-office cotthat she could use for the naps she needed to take just to make it through each workday. As Jean was entering some of the most challenging health circumstances of her life, her nephew Jim, made her a stunning offer: the gift of life.

Jim Melwert KYW news organ donation transplant Jean DelMuto organ donor kidney

Jim Melwert with his aunt and recipient, Jean.

Jean’s nephew, Jim Melwert, is the Suburban Bureau chief for KYW Newsradio 1060. When he heard about his aunt’s struggles to secure the transplant she so desperately needed, Jim made the selfless decision to donate one of his kidneys to save her life. He made the life-changing donation on February 27, 2006, a date that he and his aunt will never forget.

For many, a transplant represents a “second chance” that can inspire recipients to make commitments to maintain their health and make the most of their future. Jim turned his gift to Jean into his own “second chance”: he began giving serious consideration to his own health, making a decision to start training for and participating in a series of impressive athletic challenges. Since giving a kidney to his aunt in February 2006, Jim has participated in competitions including Ironman events, the Transplant Games, 5k swims and Donor Dashes to honor other organ donors and recipients.

Jim Melwert Transplant Games gold medals

Jim, left, began participating in athletic competitions like the Transplant Games after giving the gift of life.

In 2013, Jim delivered a powerful address as the keynote speaker for the Gift of Life Donor Program’s Living Donor Recognition Ceremony. “As a reporter, our personal experience helps shape who we are and how we see the world,” said Jim. “Being a living kidney donor, I see the triumph of the human spirit, science and the human body. Every single donor [has] the courage, the love and the desire to make a difference. There are no words to explain how it feels to see the difference we’ve made.”

Jim Melwert Jean DelMuto Donor Dash transplant living donation donate life

Jim and Jean celebrate the gift of life together at a Donor Dash event.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaOn October 16, 2015, HelpHOPELive will honor Jim Melwert for giving the gift of life with our signature HOPE award. Join us to celebrate the power of transplantation, selfless giving and second chances.