Tag Archives: kidney transplant

4 Ways To Engage Your Faith Community For Fundraising

In honor of National Donor Sabbath this week, here are a few ideas for how to engage your faith community in fundraising.


Spread Awareness With National Donor Sabbath

Between November 13 and November 15, faith communities across the country will celebrate National Donor Sabbath, a time to honor individuals who have saved lives through organ donation. It’s an opportunity for discussion and education: as Donate Life California notes, “ALL major religions support organ, eye and tissue donation, and believe it to be a final act of kindness and generosity.”

National Donor Sabbath 2015

Source: donatelife.net

HelpHOPELive will be distributing free organ donor awareness materials to congregants at St. David’s Episcopal Church in our local Wayne, PA community this year. Consider asking your faith community to honor the occasion in 2016. Contact your HelpHOPELive Fundraising Coordinator to request awareness materials to help spread the word.


Showcase Ways To Make A Difference

Your place of worship may be an ideal location to bring people together to sign up to be bone marrow donors, blood donors or registered organ donors. These drives can raise awareness for a cause, inspire attendees to donate to your HelpHOPELive Campaign and create an opportunity to enlist community volunteers who may help you to promote your Campaign or plan future fundraising events.

bone marrow drive swab

Hold a bone marrow drive to raise awareness and support for your Campaign.

In 2010, HelpHOPELive client Vinodkumar Challagundla desperately needed a bone marrow transplant to fight myelofibrosis. His faith community came together to hold bone marrow drives across the country at which potential donors could submit their cheek swabs for compatibility testing. The community found overwhelming support for the initiatives: more than 15,000 people joined the National Marrow Donor Program registry through the drives, including the donor that would save his life.


Hold A Fundraiser

A place of worship can be a great venue for a fundraising event, from a post-service pancake breakfast to a community yard sale. If you are already involved with a faith community, contact your HelpHOPELive Fundraising Coordinator for event ideas that will suit the venue and audience.

pancake breakfast

Your place of worship could be a great location for a fundraising event.

If your faith community has a suitable concert area or holds a regular musical event, consider engaging faith leaders to help you plan a concert to fundraise for your Campaign. A faith-based community concert in honor of HelpHOPELive client Allen West Edgar attracted over 300 attendees and raised significant proceeds towards Allen’s kidney transplant. Allen even performed at the concert, showing attendees how much their support meant to him.


Engage A Volunteer Network

Some faith communities have a social service and outreach component built into their mission or their youth organizations. See if your place of worship would be willing to help you reach out to individuals who want to support your fundraising efforts in the name of their faith. HelpHOPELive client Ethan Kadish’s friends and family members engaged their faith community to support Ethan through two projects, a 5K event and a performance by a local youth band, that tied into service expectations for a coming-of-age religious ceremony.

friends

Find enthusiastic volunteers through your faith community.


Want more fundraising tips and ideas? Reach out to your HelpHOPELive Fundraising Coordinator for support and browse our Blog for additional insights.

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.

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.

These Families Were Touched By Transplant

April is National Donate Life Month.To raise awareness about the importance of organ donation and to celebrate transplant donors, we are sharing stories of HOPE from patients and families touched by transplant. Here are our first three transplant stories.

touched by transplant full

Touched By Transplant: Struggle and Triumph

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This is HelpHOPELive client Derek Avillanoza’s transplant journey.

I found out I would need a transplant in February of 2011. I became very ill. My doctor referred me to a nephrologist who told me the bad news, a conversation which I recall still today: “It’s obvious you will need a kidney. It’s just a question of when.” I was devastated. I started dialysis in June of 2011.

Honestly, I didn’t know that much about kidney transplants before I needed one myself. Then reality hit me. I educated myself, and tried to learn about everything concerning kidney failure. I am still learning and educating other people to this day.

My wife and I felt like we were on top of the world when we first found out we were a donor match through virtual testing. We got very emotional. We found out just days before the procedure that we would not be an appropriate transplant match: my body would reject my wife’s kidney because of higher antibody levels in my system. We were devastated, angry, disappointed and heartbroken. But after signing up for a paired kidney exchange, we experienced another cycle of intense emotions, this time positive, when we got the ‘final’ phone call in January of 2015.

I was absolutely nervous before the operation, because I didn’t personally know many people who had undergone a transplant. The transplant team at UC Davis was outstanding and very informative, letting me know exactly what to expect. I asked a whole bunch of questions!

The recovery process has been very humbling and has required a lot of self-discipline as I control my daily ritual. I have to take prescribed medications at a pre-appointed time twice a day, check my vitals twice a day, manage a strict diet to keep control of my diabetes, and fill out a daily transplant diary to monitor physical changes. I have to chart all of the medications I take (18 in the morning, 15 at night). Oh, and then there’s bloodwork twice a week, and a 6.5-hour drive every Tuesday to visit UC Davis. These steps are worth every minute – they extend my life. I am very thankful.

Friends and family have been very supportive, and I’m very grateful for their kindness and love. Without my wife’s constant urging, I would not even be here talking about my transplant today. I believe that we got married for a reason: she was sent down from heaven to be my angel.

I have had to medically retire from my career in government because of my illness. We were advised by the financial coordinator at UC Davis Transplant Center to pursue a fundraising campaign with HelpHOPELive to cover medical and relocation expenses related to the transplant. We continue to work with HelpHOPELive because we’ve started to receive medical bills associated with the transplant, and we are also incurring expenses related to the medications I need to stay healthy.

I am so blessed and grateful to have gone through this procedure. It has extended my life so that I can spend more time with my wife, children and grandkids.

These are the five words that describe my transplant journey: Grateful. Honored. Humbled. Overwhelmed. Emotional.

 

Touched By Transplant: A Sense of Destiny

David, David Ludwig, HelpHOPELive, transplant, lung, lungs, lung transplant, paying for lung transplant, post-transplant, transplant medications, transplant meds, cystic fibrosis, CF

This is HelpHOPELive client David Ludwig’s transplant journey.

I really couldn’t believe it when I found out I needed a double lung transplant. I always thought my cystic fibrosis would have been cured before I reached that point. The whole idea of a transplant seemed far-fetched to me, and I knew very little about transplants prior to having one myself. All I knew was that post-transplant, you live on immunosuppressants for the rest of your life. Unfortunately, I didn’t have much time to learn more about my transplant before it occurred.

I never actually received “the call” telling me I would get a transplant. I had just survived multiple emergency surgeries, including a procedure prompted by my lung rupturing which caused me to bleed out internally. I had a pneumothorax while receiving treatment for a cystic fibrosis-related illness, and I was in critical condition when I was transferred to the Keck USC Medical Center for transplant.

My family was very supportive and so were the friends who found out about my circumstances later. My aunt found HelpHOPELive, and she and my mother used my Campaign Page to fundraise for me while I was incapacitated.

I felt very calm when they offered me the transplant. My life was at stake. I remember giving the resident surgeon a thumbs-up when he asked if I wanted the double lung transplant. I had a strange sense of comfort during the entire process, despite having large extracorporeal membrane oxygenation (ECMO) tubes and a tracheostomy tube in my neck and additional tubes everywhere. A sense of destiny and the will to overcome seemed to envelop me during this time.

The recovery has been intensive, partially due to post-transplant kidney failure which lasted for six weeks. I was bedridden for several months, so I lost all muscle in my arms and especially in my legs. I had to learn how to walk again. I’m still building up stamina with my new lungs, and that has been the hardest part of the recovery process.

I have new expenses after the transplant to add to the expenses I have had to manage because of my cystic fibrosis. Now, in addition to anti-rejection medications, I take several drugs and numerous vitamins to offset the side effects of the immunosuppressants.

My future is optimistic. Cystic fibrosis is typically a death sentence, a 13- to 30-year time bomb. These new lungs have spared me from my original fate. I am forever grateful to my donor. My donor’s tragic loss has been my gain, and the same is true for many others. The biggest thing I’m looking forward to is playing a round of golf. Now, I will be able to do it without wheezing or breathing through the proverbial straw.

These are the five words that describe my transplant journey: Hope. Gratitude. Rebirth. Renewal. Happiness.

 

Touched By Transplant: Infectious Positivity

Josie, Josie Setters, Chase, Chase Setters, transplant, pre-transplant, fundraising, pre-transplant costs, pre-transplant expenses, HelpHOPELive

This is HelpHOPELive client Josie Marie Setters’ transplant journey as told by her father, Chase Setters.  

My wacky and energetic 5-year-old daughter, Josie, was taken to a specialist at The Children’s Hospital at OU Medicine in Oklahoma City to evaluate recurring bladder infections. During preliminary checks, it was discovered that Josie’s blood pressure was upwards of 160/90. She was immediately admitted, and two days later, we learned that Josie had chronic kidney disease. Her kidneys were operating at around 30%.

Josie, now 8, remains wacky and energetic despite her diagnosis. Her infectious positivity and silliness have united our community around her. She needs a kidney transplant to survive, and we are hoping to get Josie the transplant she needs in the summer so she can continue to attend school like a normal 8-year-old.

I’m in Information Technology by profession, and I’ve always been a bit of a geek. In early 2015, I posted a Facebook link to Josie’s story and HelpHOPELive campaign. Less than 5 minutes after I posted the link, Wedge, a serial gamer and host of the YouTube channel TheManaSource reached out to me and asked permission to use my story. Next thing I knew, I was tagged in a video that Wedge had created specifically to help my daughter fundraise.

This gesture meant the world to me. Most of us can grasp the idea of selfless giving, but once you witness this miracle in person, it is no longer an idea. It manifests in an incredibly powerful and humbling way, and it becomes almost impossible to express the gratitude you feel towards those who contribute.

We have received donations through HelpHOPELive from contributors across the U.S. One-time strangers who got to know us through Wedge’s video have donated over $1,000 to help Josie. My company of 75 employees pulled together to donate over $10,000, which the company matched.

Is human nature good or evil? Maybe my view has been skewed as I’ve worked to fundraise for my daughter’s lifesaving transplant, but my resounding answer is that our nature is good.

These are the five words that describe my transplant journey so far: Fear. Acceptance. Limitations. Waiting. Hope.

 

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