Tag Archives: advocacy

Meet Advocacy Award Honoree Senator Pat Toomey

We present our 2015 Advocacy award to Senator Pat Toomey for organ donor awareness and disability advocacy.

Senator Pat Toomey joined the U.S. Senate in 2011. In May of 2013, he became acquainted with the story of a ten-year-old girl living in Philadelphia who was fighting for her life following a cystic fibrosis diagnosis. Sarah Murnaghan desperately needed a double lung transplant, but according to the Under 12 Rule established by the Organ Procurement and Transplantation Network, Sarah would not be able to join the waiting list for an adult double lung transplant until she turned twelve. Far fewer lungs are available for children under 12 than for adults. As Sarah’s chances of a lifesaving transplant grew slim, her parents launched a desperate online campaign to change transplant regulations to save Sarah’s life.

Senator Pat Toomey with Sarah Murnaghan

Senator Pat Toomey with Sarah Murnaghan

With only weeks left to live without a transplant, Sarah was granted a ten-day period in which she would be placed on the adult transplant list. After those ten days, she would return to the children’s transplant list. As Sarah and her family waited and appealed to their government in a state of desperation, Senator Toomey addressed the U.S. Senate to appeal to Kathleen Sebelius, the Secretary of Health and Human Services, on Sarah’s behalf.

“I rise to speak briefly about a heartrending situation in Pennsylvania,” Toomey said. “There is a brave little ten-year-old girl who is fighting for her life at the Children’s Hospital of Pennsylvania in Philadelphia. At this moment, her government is failing her…The girl is a good candidate, but she’s not on the list.”

Senator Pat Toomey

Senator Toomey addressed the Senate on behalf of Sarah.

Toomey stressed the importance of making a permanent change to the rule, not a one-off exception for Sarah. “What we want is a system that works,” he said. “I think that any child who is a viable candidate for the adult transplant and who has sufficiency urgency ought to be able to go on the adult list. We’re not suggesting that we make an exception for Sarah…stop making exceptions that exclude Sarah. We’re asking for a change in a policy that is flawed.”

Senator Toomey’s appeal on behalf of Sarah worked. The Organ Procurement and Transplantation Network not only allowed Sarah to be placed on the adult waiting list, they agreed to allow children under 12 to be given case-by-case exceptions based on their eligibility and health condition.

Sarah Murnaghan

Today, Sarah is breathing on her own thanks to the Senator’s efforts.

Today, after a successful double lung transplant with adult lungs, Sarah is breathing on her own for the first time in years. Senator Toomey took a stand on the Senate floor, and his advocacy saved Sarah’s life and impacted dozens of other families in need.

Senator Toomey’s advocacy initiatives extend to multiple areas that impact HelpHOPELive clients. With Senator Bob Casey, he supported the bipartisan Achieving a Better Life Experience bill, proposed to help families to save funds for their loved ones living with disabilities.

Senator Toomey ABLE Act

Senator Toomey advocates on behalf of people with disabilities and their families.

The Advocacy award will be presented to Senator Toomey at this year’s HelpHOPE-Live It Up! benefit on October16.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaEach year at HelpHOPELive’s annual signature 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.

Meet Volunteer of the Year Award Honoree Chris Kanter

We present our 2015 Volunteer of the Year award to Christine V. Kanter for outstanding service and dedication to HelpHOPELive.

Chris first began contributing to HelpHOPELive, then the National Heart Assist and Transplant Fund, in 1983, as one of its founding employees. She joined a powerful community of individuals working to empower heart transplant patients to fundraise for a procedure still considered “experimental” and therefore not covered by insurance. Chris witnessed the financial and emotional impact of transplantation in a family member and used that awareness to fuel her service to HelpHOPELive.

Pat Kolff and Christine Kanter 1983 NTAF NTHAF heart transplant HelpHOPELive

Christine (right) with HelpHOPELive co-founder Pat Kolff in 1983

“Going to work every day was exciting,” Chris recounted in a HelpHOPELive interview. “The need was there, and we were there for our patients at every twist and turn as the field of transplantation progressed…It was energizing – what we did worked!”

After 20 years of devoted service in the Patient Services department, Chris retired from her position and joined the HelpHOPELive Board in order to continue serving the organization. Christine was instrumental in planning the first-ever HelpHOPE-Live It Up! annual fundraising event in 2013 to raise funds and awareness for HelpHOPELive. After helping to launch the event, Chris served as its co-chair in 2014 and participated in 2015 as an active member of HelpHOPELive’s Live It Up! event committee.

Heather Moore and Christine Kanter HelpHOPE-Live It Up!, Live It Up 15, LiveItUp15

Christine (right) with her HelpHOPE-Live It Up! co-chair Heather Moore

During her quarter-century of service to HelpHOPELive, Chris has attracted loyal supporters in her extended community to the organization’s cause through word-of-mouth and home fundraising events. A friend of HelpHOPELive founders Dr. Jack and Patricia Kolff, Chris is a founding member of the Kolff Society, a giving society whose members strive to assist HelpHOPELive in furthering its mission to reach families in need across America by providing cumulative gifts of $1,000 or more each year.

Christine Kanter HelpHOPELive NTAF NHTAF

Christine continues to passionately support HelpHOPELive

“I cherish my involvement with HelpHOPELive,” Chris said. “For…30 years we have helped people in need – I want that to continue. I give to HelpHOPELive because I want to support the passion [and] the hope.”

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaJoin us at HelpHOPE-Live It Up! on October 16 as we honor Chris for her service and dedication to our mission.

Each year at HelpHOPELive’s annual signature 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.

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.

Making Connections After A Spinal Cord Injury Can Change Your Life

At age 13, a spinal cord injury changed Reveca Torres’s life. She began working with HelpHOPELive to fundraise for injury-related expenses in 2008. Now the executive director of the spinal cord injury support community BACKBONES, Reveca devotes her time to helping others discover vital SCI resources and find joy and connection after injury. Here are her insights on connecting with others, fighting stigmas and learning to embrace your new life.


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Do spinal cord injuries create both physical and emotional challenges?


Definitely. Physically, your body is entirely different post-injury. You have to re-learn what your body can do. All of your internal systems are affected, from bowels and bladder to body temperature and your sense of touch. Everything is so different. It takes years to be self-aware and understand the new feelings, signals and reactions in your body.

Initially, I thought of my body as broken. Now I know that my body is still alive. It’s still working. I won’t ignore it. You have to learn to stay healthy or you risk being stuck in bed healing from issues and other injuries.


What can you learn through connecting with peers?


I think it’s really important to get to know other people with spinal cord injuries so you can begin to understand how they handle their daily lives. Connection is a great way to learn from others and discover some self-acceptance, too. Getting comfortable with your situation is one of the biggest hurdles when you are first injured. You need to see that others in your situation are making it work.

connect with others chat coffee shop work

Connect with others with SCI and learn how they make it work.

Knowing that someone else understands exactly what you’re going through is powerful. It’s wonderful to not have to explain yourself or what you’re feeling. You can talk, ask questions and learn from each other. There’s a lot of relief knowing that someone else knows what it’s like to be you. I hear that when I talk to people on the phone: the conversation starts with a lot of questions, nerves and anticipation. By the end of the call, there’s a sound of relief in the caller’s voice.


What helped you to make a breakthrough after injury?


I didn’t have a lot of friends with injuries after I was injured at 13. I had to learn how to conquer a lot of physical challenges on my own. Acceptance was a big part of that – I was coping with SCI AND being a teen! At college, I met other people with injuries who were playing sports, dating and traveling. That community gave me the confidence to try new things.

moving airplane sky clouds skyscraper city

Moving away from home helped Reveca find her independence.

I had a lot of support from family and friends and they were behind me all the way after I was injured, but ultimately they couldn’t show me how to build a life for myself. I had to see other people make it happen to get there myself. Moving away from home made a big difference for me. Going away to college was intimidating, but when I got there, other people would approach me and start conversations and we’d become friends. Give yourself those opportunities, whether that means putting yourself out there or moving to an area that gives you access to a stronger SCI community.


Is it tough to make connections if you are nervous or naturally shy?


It is always intimidating at first to connect with others or ask questions. Those physical and emotional challenges after injury can make you feel like you need someone else to advocate for you. Someone close to me gave me a really good piece of advice: become your own advocate. Family members provide as much as they can for someone they love and they want you to get better and get to a good emotional place, but that support can hinder your growth.


Do you have to embrace the “disabled” label to be a part of the SCI community?


Initially, I didn’t want to hang out with other people who used wheelchairs. I didn’t want to identify as “disabled” – I wanted to believe I was still the same person. I was the same person in some ways, but I was also very different after injury, and I had to learn to embrace that. Being part of the disability community doesn’t stop you from participating in the able-bodied world. You can have both!

friends blonde brunette red lipstick grass hair

“There shouldn’t be a line between ‘us’ and ‘them.'”

Being injured is not something any of us asked for or want to be a part of, but the SCI community is a great group of people. We have all gone through something life-changing and we have learned how to adapt. These communities are essential not just for people who are injured but for their friends and family members as well. Our events are open to people with and without disabilities. There shouldn’t be a line between “us” and “them.” We are all human, and we can all relate to one another on different levels.


 

BACKBONES splash wheelchair beach disability spinal cord injury Reveca Torres


To connect with other people with spinal cord injuries, visit BACKBONES online. If you need help covering uninsured injury-related expenses, reach out to us.

Meet Our 2015 Live It Up! Award Honorees

Our signature fundraising event Live It Up! kicks off on Friday, October 16, 2015. Here are the individuals and families who will be honored for their vision, dedication and courage.


The Help Award goes to…

Libby Judge Love Live Give 2015

Team Libby Judge

for excellence in fundraising for the Mid-Atlantic Spinal Cord Injury Fund.


The HOPE Award goes to…

KYW’s Jim Melwert

for giving the gift of life.


The Live Award goes to…

 Aaron Loy HelpHOPELive prosthetics

Aaron Loy

for inspiration after illness.


 The Advocacy Award goes to…

U.S. Senator Pat Toomey

for supporting organ donor awareness and the ABLE Act.


 The Volunteer of the Year Award goes to…

https://helphopelive.org/media/content_panel_images/Chris_Kanter_cropped.JPG

Christine V. Kanter

for service and dedication to HelpHOPELive.


Stay tuned: we’ll be featuring each of these Live It Up! honorees in upcoming Blog posts! Recipients will be honored by HelpHOPELive on October 16 from 7 to 11 p.m. at Valley Forge Military Academy’s Mellon Hall. Join us!

 

The Rewards And Challenges Of Transplant Social Work

You already know what it feels like to prepare for a transplant as a patient. But how do transplant professionals view the process? We asked Laurie McDonald, a clinical social worker and case manager for the UNC Center for Transplant Care, to answer our questions.

heart in hands transplant


What are some of the biggest challenges of transplant social work?

At times, I really, really want a particular organ recipient or donor to succeed, but based on his or her circumstances, that person is just not a suitable candidate. After years and years of this line of work, I have to console myself with the truth: transplant is not for everyone. For some, a transplant will make the situation worse instead of better. It’s difficult to keep that message at the forefront when the person in front of me truly believes a transplant will save them.


What are some of the rewards you experience?

Just this week, two people were transplanted in a row. Now, they are delighted to be breathing without supplemental oxygen and walking more easily than they have in a long time. To see joy and relief on the faces of transplant recipients and their family members is wonderful. I love seeing patients years post-transplant living full lives that honor their donors. Transplant remains a daily part of their lives, but it is no longer the central focus.


Have you witnessed areas of progress in transplant assessment?

Within the past few years, we have become more invested in transplant assessment tools that will give us concrete, unbiased information. When a doctor recommends lab work, those tests will result in definitive numbers that the doctor can use to diagnose and treat you. When you’re dealing with social and emotional factors, it’s far more difficult to accurately quantify and represent a patient’s profile.

We have started using a validated measure that is linked to patient outcomes developed by Jose Maldonado at Stanford. I use this risk assessment tool to come up with a score that reflects a candidate’s psychosocial situation. It’s imperfect, but it’s absolutely progress. It makes it far easier for team members to compare information and communicate across specialties. Personal and even subconscious biases are always a factor, so it’s extremely important for us to continue to take steps in this direction.


What advice would you give to those who are considering transplant social work?

Do it! It’s stimulating, rewarding, wonderful work. I absolutely love it. 15 years in and I’m not bored yet!

Quality improvement is really important in transplant in general and at UNC in particular. We are always learning and working to do things better. There are advances in medication, medical techniques, social evaluations and other areas happening constantly. It’s really an interesting place to be.


Share your experiences as a transplant candidate, recipient or social worker on Facebook.

What Can Spinal Cord Injury Therapy Do For Me?

As Mobility Awareness Month continues, we look at how physical therapy can help to boost your body and mind following a spinal cord injury.

Robert Mudge became a C5/C6 quadriplegic after an accident in 2001. Physical therapy and adaptive athletics have helped Robert to maintain a positive mindset and keep his body strong.

Robert Mudge quadriplegic rugby adaptive athletics

Robert, did your injury influence your interests and hobbies?

Growing up, I tried any sport or activity that grabbed my interest thanks to my supportive parents, including baseball, football, working out, bowling, BMX racing, surfing and fishing.

After my injury, I thought all of these hobbies and others were lost to me. However, over the years I’ve learned that I can still take part in similar sports and activities, just in a different manner. It wasn’t until 2007 that I discovered I could play a team sport again: quad rugby, with the Brooks Bandits in Jacksonville, Florida. In order to surf, instead of standing on the board I can lie on my stomach on the board, propped up on my elbows.

There are countless sports that can be played with a little adaptation: playing pool, swimming, table tennis, tennis, fishing, cycling, bowling, basketball, hockey…the list goes on.

Robert Mudge surf quadriplegic wheelchair surfing

Were you hesitant to get involved in adaptive athletics?

I was a little apprehensive at first when I gave these new activities a try, because I knew I wouldn’t be able to engage at the same caliber I was used to. I tried not to let that fear limit me or prevent the growth that I could experience by participating.

What helps you maintain your peace-of-mind?

Hope and faith both help me keep my sanity: hope that I can get better, and faith that I will. There are no guarantees that either will happen, but I believe both of those forces are very powerful. Combining those elements with relentless effort, goals, support from family and friends and a determination never to give up helped me get to where I am today.

How do you cope with injury anniversaries?

When I am faced with injury anniversaries or times when I feel like my progress is stagnant, I reflect back on how far I’ve come and celebrate the things I CAN do rather than harping on the things I still can’t do.

Robert Mudge walk stand quadriplegic

What did physical therapy do for you?

Thanks to a HelpHOPELive fundraiser, I was able to afford my first trip to Project Walk in Carlsbad, California. I realized I had found what I was looking for. It was so refreshing to be treated as a ‘normal’ person and to be moved and rehabilitated outside of my wheelchair.

[Project Walk] had me doing things I knew I couldn’t do, and that approach was frustrating at first. The staff recognized that one day, with repetitive training, I could get there. That’s exactly what happened over the years. I’ve continued working on rehabilitation in my home gym and at Project Walk Orlando year-round.

Do you find your hobbies therapeutic?

I think moving in general is therapeutic. Whether you’re engaging your mind or your body, staying active and in motion is a great thing. Just like they say, things in motion stay in motion.


Brian Keeter was left paralyzed from the waist down after a near-fatal car accident. Brian works out and advocates for spinal cord injury research to stay perpetually engaged in recovery.

Brian Keeter advocacy spinal cord injury SCI

Brian, did your injury change your participation in sports?

I played sports my entire life, and even played basketball in college. Leading up the accident, I had been playing in recreational league game with my friends and I played basketball several times every week, including Saturday mornings at 7 am. I have spent a lot of time working with exercise specialists to get stronger, stay fit and maximize my physical functioning. I’ve stayed on top of the research being done to find cures or improve rehabilitative therapies. I started my own foundation to identify and support spinal cord injury research.

Walk On Foundation spinal cord injury research tech rehab physical therapy

What do you like about working out?

I try to do all I can do to maximize what I have and prepare my body for the treatments and therapies that will be available in the future. Working out is therapeutic: you get to see that there are others dealing with the same or similar circumstances and, in some cases, worse circumstances. When I work out, I feel like I am physically working to do something about my physical limitations.

I have gotten stronger, particularly in my upper body and core, and I have gained movement in my hip flexors and gluts. My body feels better after working out because the exercises loosen me up and let me stretch out. When I have been traveling or have otherwise been unable to work out for a few days, I experience more pain, most likely because of increased tightness in my body.

Celebrate Mobility Awareness Month with us! Share your story on Facebook or on Twitter.