Reflections on my Experience at the Building Research Capacity in the Dialysis Community at the Local Level Workshop

By David White, Kidney Advocacy Committee member

The “Building Research Capacity in the Dialysis Community at the Local Level” workshop was the first of its kind to focus exclusively on improving the research capacity of dialysis clinics. The workshop, funded by a Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award, brought together patients, care partners, clinic staff members, medical providers, corporate dialysis organization representatives, and researchers to discuss the benefits and realities of incorporating research into routine dialysis care delivery and identify facilitators of and barriers to performing real-world research in local dialysis clinics.


As a former in-center hemodialysis patient, my biggest takeaways were learning that there is a huge difference between the number of dialysis patients who are interested in research and the number who actually participate in research and that the biggest reason they want to participate is to help prevent others from developing kidney disease (many thanks to Derek Forfang for sharing this information with the workshop participants during a very informative presentation and panel discussion).

Just as clinicians should embrace the concept of patient-centered care, researchers and contracted research organizations should be encouraged to make dialysis clinics full partners in any research project that their patients are engaged in. Everyone from clinic leadership to the nurses, techs, patients and families, security personnel, and even transportation providers should have the opportunity to feel like a partner in research; when all contributions are valued and celebrated, any initiative will become easier to execute.

Tavon Sumler, a dialysis patient care technician, shared a great insight as to why he found integrating research into his daily work challenging: he often would have to take a few extra minutes to find the required materials. A few minutes in a dialysis clinic can mean the difference between life and death. I watched clinic staff work for five years and can attest that they have a lot to do and not a lot of time to do it – even before asking them to add clinical trial tasks to their duties.

My personal experience with clinical trials illustrates how relationships are key to conducting effective research in dialysis clinics. I chose to participate in one clinical trial my clinic offered because I was approached by my nurse practitioner, a person I knew and trusted. She explained the purpose of study to me and how the study would be conducted, and emphasized that I could end my participation at any time. Once I agreed to participate, the next step was introducing me to my researcher contact, and she made the introduction personally (I learned during the workshop that this is called a “warm handoff”).

I had another opportunity to participate in clinical trial in the same clinic, and I was not the least bit impressed by the researcher’s attempt to engage with me. I was sitting comfortably during my dialysis “run” one afternoon when a person I had never seen before walked up to my station and asked if I would be interested in being a study participant. My very first thought was “why did you walk up to me – there are two dozen people sitting in chairs,” and that’s exactly what I asked her. She told me that she had been told that I would be a good candidate, but her explanation was even more off-putting than her uninvited approach; it felt like she would rather talk to the clipboard she was holding than to me. I responded by telling her that I was not interested, but it would have been more accurate to say that I was not interested in her or that I was not interested in the study at that time. We both left the encounter disappointed. Mind you, this happened at the very same clinic; if there was a general protocol in place for approaching potential study participants (or a protocol that was already in place was followed), I may very well have responded more positively.

Some lessons learned from this encounter that might be helpful to researchers are:

  • I was never informed that someone would be approaching me to see if I might be interested in being a study participant – either before that day or at the beginning of my dialysis shift. Had I been approached in advance, I would have been more likely to participate;
  • The person who approached me had poor communication skills. Researchers should practice their approach before engaging with patients;
  • No one at the clinic or the research facility ever followed up with me to see why I wasn’t interested. By following up they may learn something to help the next time around and

Communication is a key ingredient to a successful research environment and is one of the biggest stumbling blocks to building research capacity in dialysis clinics.   I recommend that every proposal to conduct research in a dialysis clinic setting include a training component that emphasizes communication skills, cultural humility, and seamless integration of research tasks into the clinic’s workflow.



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Congressional Action to Support Living Organ Donation in the Family and Medical Leave Act

Today, we announce a significant win with the removal of a barrier to living organ donation! The National Kidney Foundation worked closely with Rep. Jaime Herrera Beutler (R-WA) to develop language to protect living donors’ jobs that will be included in the Committee Report to the Fiscal Year 2019 Appropriations Bill for the Departments of Labor, Health and Human Services, Education and Related Agencies.

capitol building

The provision in the Committee Report requests the Department of Labor to give notice on its website or in other public communications that living donors who are qualified for the Family and Medical Leave Act (FMLA) are eligible for family medical leave when they donate an organ.  This means that if the Department of Labor makes the requested notification, living donors who take time off for surgery and recovery will have their jobs guaranteed when they return to work, which is a big concern for living donors.

We would like to thank Congresswoman Jaime Herrera Beutler for making this achievement possible. However, while this is a huge victory for patients and organ donors, we need to keep pressing Congress to pass the Living Donor Protection Act (H.R. 1270) which also provides protection from discrimination in the pricing or availability of life, disability or long-term care insurance.   Please write them today, if you have not already done so, to ask them to become a co-sponsor of H.R. 1270.

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Florida State Legislators Making Footprints in the Sand at the Cocoa Beach Kidney Walk

By Bill Hahn, Kidney Advocacy Committee member and kidney transplant recipient

On Saturday May 12th, 2018, the National Kidney Foundation of Florida (NKFF) held its 7th Annual Cocoa Beach Footprints in the Sand Kidney Walk. Congressman Bill Posey, our honorary walk chair, and State Senator Debbie Mayfield joined hundreds of patients, donors, recipients and volunteers to celebrate the gift of life though organ, tissue and eye donation.


2018 Cocoa Beach Footprints in the Sand Kidney Walk

“Raising awareness is a key component to combating kidney disease and ultimately saving lives. So many of us have family, friends and loved ones who are fighting this disease and they need our strength and support. The road ahead may not be easy for them, but as the Kidney Walk demonstrates, they do not have to travel that path alone.” said Congressman Bill Posey.

As part of our “Celebration of Life” weekend, we saluted Florida’s living kidney donors 3x7_LivingDonorsDay_Banner.jpgwith a Living Kidney Donor Day proclamation. This was our second annual tribute to these selfless heroes who share the gift of life. Living kidney donation is the most successful treatment we currently have in extended life and providing the chronically ill a better quality of life.

We also took the opportunity to advocate for protecting our living kidney donors through the Living Donor Protection Act (H.R. 1270).  The Living Donor Protection Act is a common-sense bill that will make it easier for donors to give the gift of life to those in need by ensuring job security through the Family and Medical Leave Act and ending certain forms of insurance discrimination that living donors often face. Sometimes making small changes in the law can make a big difference in people’s lives!

Donor Mothers.jpg

The Footprints in the Sand Kidney Walk also honored deceased donors’ moms on Mother’s Day weekend. We dined and walked together on a beach full of life. We celebrated our heroes. Congressman Posey presented a Congressional Certificate of Recognition to honor the mothers of organ donors. He also submitted a Congressional Record statement to celebrate these donor moms and the ultimate gift of life provided by their child. Thank you, Congressman Posey, for providing this congressional tribute for our donor moms. Many of these incredible women have been advocating for the gift of life for decades and this act will help give them a measure of closure for their loss.

What will you do to honor our kidney donors?  Volunteer and support the National Kidney Foundation at an upcoming event?  Become an advocate by writing your legislators on important policy initiatives supporting kidney patients and donors?

See our video of the 2018 Cocoa Beach Kidney Walk:

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Carrying Advocacy Forward in May

By Judy Rosenstein, National Kidney Foundation Kidney Advocacy Committee Member

I am Judith Rosenstein and I live in New Jersey.  During March, I had the opportunity to come to Washington, DC for the 5th Annual Kidney Patient Summit to meet with my congressional delegation.  During our meetings we discussed the Living Donor Protection Act (H.R. 1270), a pilot program to promote early detection and treatment of chronic kidney disease (H.R. 3867), and a request to support for appropriations funding for federal programs to support patients, living organ donation, and research.


Left to Right: David Salomon, Sara Booth, John Hyde, Gail Salomon, Congressman Lance, Judy Rosenstein, Abe Rosenstein and Meg Gilmartin

However, advocating for kidney patients doesn’t end in Washington, D.C., nor did my efforts.  On May 14th, I met with Congressman Lance along with several living donors and kidney patients, and NKF’s Greater New York office Executive Director, Meg Gilmartin.  We met with him to witness his public announcement for co-sponsoring the Living Donor Protection Act.

This tale begins with an advocate from Pittsburgh, PA.  Bobbie Reed’s son, Alex, received a kidney transplant from a constituent of Rep. Lance, John Hyde.  Bobbie felt that the Congressman should be aware of the donor’s selfless act.  Though I am not from his district, I reached out to a friend who was.  Gail Salomon was motivated to become an altruistic donor after her husband David received a kidney from a stranger.

While setting up a meeting with the Congressman’s office to introduce him to John, Gail told her story and so moved the Congressman’s staff that they convinced him to become a co-sponsor of the Living Donor Protection Act.  To show his support, the Congressman asked us to join him at his office to celebrate this and learn more about living organ donation.

He told us about a friend from his church who had received a kidney transplant from another friend.  We explained the difference between directed donation and altruistic donation and asked him to encourage his colleagues to support HR 1270.  He promised that he would reach out to them.

This is the power of a patient’s advocacy and a patient’s story.  Will you join me by sharing yours today with your legislators’ office?  Will you become an advocate for kidney patients, as I have?

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An Advocate Winning the Day in Arkansas

By Dave Oberembt, NKF Kidney Advocacy Committee member

Approximately a year and half ago I was fortunate enough to receive a second chance on life and received a donor kidney.  I have a background in politics and have wanted to use some of my experience to give back to the kidney community.  The National Kidney Foundation allowed me an amazing opportunity to get involved as a member of the Kidney Advocacy Committee.

Arkansas_State_Capitol,_Little_Rock 2

In Arkansas, I have been following a state legislative tax reform committee. I tracked the committee mostly for personal and professional interest, I never dreamt kidney policy would be involved.  While reading an article recapping a recent hearing, I was surprised to see a tax deduction for organ donors was on the list of deductions being considered for elimination.

The first thing I did was email Andrew Fullerton in the Government Relations office at National Kidney Foundation to notify him of the development. Before I dived into the details of the tax deduction, I began to think about what groups or organizations would ally with us in supporting this tax deduction.  I reached out to the transplant hospital in Arkansas and made sure they were aware.  I also reached out to Arkansas Regional Organ Recovery Agency.  The National Kidney Foundation’s local office also reached out to other kidney disease organizations in Arkansas. As these conversations were going on, the National Kidney Foundation sent an action alert to kidney disease activists in Arkansas to ask them to write their state legislators.

Andrew Fullerton already had information about the tax deduction on file. The National Kidney Foundation was able to quickly give statistics on living organ donation and kidney disease’s impact on Arkansas.  I began spending my days at the capital trying to track downs members of the committee.

I spoke with one state senator, told her my story and my concerns about the possible elimination of the tax deduction.  She agreed and told me that she was a kidney donor herself!  Another influential member of the Legislature revealed his wife was kidney donor!  I spoke with a few other members of the committee and most seemed supportive of keeping the tax deduction.  It is amazing what you learn while advocating for kidney issues.

In the end, the members with personal connections to kidney donations were the most vocal supporters of the tax.  After a very brief discussion the committee voted to keep the tax deduction in place!  My biggest takeaway from this experience is the power of initiating conversations about kidney issues and how it can lead to connections and experiences that you would never expect.  I hope this experience will lead to the implementation of more policies that will benefit kidney patients and donors here in Arkansas.

If you want to join me in a promoting future policy changes in Arkansas, or nationally, please sign up to become an advocate!


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A Win for Living Organ Donors in Colorado!

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By Shannon Clark, Executive Director in NKF Serving Colorado, New Mexico, Montana, and Wyoming


Coloradans this weekend had more to celebrate than their amazing mothers (I do hope you all remembered flowers for them)!  On May 7th, in one of their last acts this legislative year, the Colorado state Senate joined their state House in passing exciting new legislation to support living organ donation.

HB 1202, the Living Organ Donor Support Act, will provide private employers a voluntary tax credit of 35% of an employee’s salary (up to salaries of $80,000 annually) to cover up to 10 business days of paid leave.  As of May 10th, nearly 2,300 Coloradans were on the transplant waitlist, more than 1,725 of those waiting for a kidney.  During 2017, more than 120 Coloradans gave the gift of life.

The National Kidney Foundation was pleased to collaborate on this initiative led by the American Transplant Foundation and applauds the Colorado legislature for taking this proactive step to increase living organ donation.  The Living Organ Donor Support Act will remove a significant barrier for organ donors who may not step forward if they are afraid to lose their job or income during their recovery period after surgery.

Kidney patients and living organ donors across the country should thank the Colorado legislature for passing this initiative.

Please consider signing up to become an advocate with the National Kidney Foundation so that you can help us achieve policy like this in your state!

The bill is expected to be signed by the Governor later this month.

Update (5.18.18):

If you are interested in learning more about this law and its passage, ATF is hosting a conference call on May 22nd:

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Changing the Law to Help Kidney Donors

By Donna Yule, Living Kidney Donor and Kidney Patient Advocate

Marty Durand and I have been friends for well over a decade, so it seemed like a perfectly natural choice to donate a kidney to her when she needed it almost two years ago. Going through the process of matching, preparing and recovering from surgery was life-saving for her and life-changing for me.

Donna Yule and Co

That’s me and Marty in the front.  Our friend Senator Cherie Buckner-Webb is in the back row, to the left of the mirror.

When we came through the experience, we both felt strongly that we needed to use our combined life skills and professional backgrounds to make it easier for more people to become living donors. Marty is a lawyer and we were both lobbyists.  We have a good understanding of Idaho’s politics and we decided we would do everything we could to advocate for kidney donation.

Idaho is one of only a handful of states that offer a tax credit to a living donor of up to $5000 to cover the costs of travel, meals, and other expenses associated with the surgery.  When I had to travel to Seattle once prior to the surgery, and then needed to stay in Seattle for two and a half weeks after the surgery, this tax credit was so helpful. But we knew Idaho could do more legislatively to encourage live kidney donation.

During the 2016 legislative session, we worked with a State Senator to make changes to state law to make Family and Medical Leave Act (FMLA) coverage available to kidney donors. This unpaid leave protects donors’ jobs. After some set-backs, in the summer of 2017, Marty drafted legislation to prohibit insurance carriers from discriminating against living donors in disability, long term care, and life insurance. While not all insurance companies were hiking up the cost of premiums for the donors, or rejecting donors altogether, there were some engaging in that practice and we wanted to prevent it.

State Senator Cherie Buckner-Webb agreed to sponsor the bill on our behalf.  She was the perfect person to carry the bill because she is so highly respected by both parties.  Marty researched kidney donation and living donors so the Senator would have answers to any possible questions. She spoke to her nephrologist and the National Kidney Foundation, and its Utah/Idaho affiliate to garner support.

As the 2018 session grew closer, we knew we needed to identify where any possible opposition might come from. Senator Bucker-Webb and Marty talked to other Senators and got many to sign on as co-sponsors.  The Senator then met with the Director of the Idaho State Department of Insurance, Dean Cameron. He agreed to come to the legislature and speak in favor of the bill.  Marty drafted talking points and got letters of support from her nephrologist, the National Kidney Foundation and its Utah/Idaho affiliate.   Senator Buckner-Webb, Marty and I all met with an insurance industry lobbyist in the Senator’s office at the start of the legislative session to see if we could get them to support the legislation.

The bill was sent to Committee for a hearing.  Marty and the Senator drafted talking points and compiled the letters of support for Committee members.  Director Cameron was there, at Senator Bucker-Webb’s request, to answer questions posed by the Committee.  Marty and I testified in support of the bill by simply telling our own personal stories.  No one testified in opposition.

The vote on the floor of the Senate was 24 in favor and 11 in opposition, so then it was on to the House of Representatives.  In the House, Marty, Senator Buckner-Web, and Rep. Sally Toone repeated the process.  Once again there was no opposition and the bill passed the House!

Then all we needed was the Governor’s signature. Governor Otter is the Honorary Idaho Chair of the National Kidney Foundation and Senator Buckner-Webb requested an official signing ceremony in the Governor’s office.

ID LDPA Sign Photo

(Left to right:  Kat Bowen, National Kidney Foundation Idaho/Utah Chapter; Marty Durand; Sen. Cherie Buckner Webb, sponsor; Gov. Butch Otter; Alex Fox, National Kidney Foundation; Rep. Sally Toone, co-sponsor; Rep. Janie Ward-Engleking, co-sponsor; Donna Yule)

The moral of this story is that we can and should change policy to help kidney donors and transplant recipients. There are still more initiatives that Marty and I plan to work on. All it takes is foot work, research and commitment.  Legislators are approachable, and many have had experience with organ donation through their own friends and family.  Identify friends and possible opposition and meet with them.  Get support from other donors and recipients and have them write letters of support, or better yet, meet with legislators.  The most impactful thing you can do is to tell your own story.  Nobody can tell it better than you!

We must be advocates for ourselves!   We stand ready to help anyone in any state who wants to do the same thing. Contact Andrew Fullerton at the National Kidney Foundation if you want to make a difference too!



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Marching Forward with Kidney Disease Advocacy

By Troy Zimmerman, Vice President of Government Relations

With the end of March, National Kidney Month, I am writing this blog to celebrate the astonishing accomplishments of kidney patient advocates across the country.  It truly was an incredible month for us all!

March began with an amazing 5th Annual Kidney Patient Summit in Washington, DC, hosted by the National Kidney Foundation.  Nearly 100 patients and family members from 41 states, and five organizations, met with 145 legislators’ offices.  They advocated for the Living Donor Protection Act (H.R. 1270) to protect living kidney donors, for improved early detection and treatment of chronic kidney disease (CKD) under H.R. 3867, and increased funding for federal CKD research, awareness and assistance programs.  This effort began to bear fruit almost immediately as additional Representatives signed on to co-sponsor our legislation after the Summit concluded.

Group Photo

On March 21st, we achieved a victory as Congress passed agency funding legislation for FY2018.  The CDC’s National Center for Chronic Disease Control and Prevention and Health Promotion received $2.5 million, a nearly 20% increase.  The National Institute of Diabetes and Digestive and Kidney Diseases’ (NIDDK) funding was increased by $100 million, to $1.97 billion.  Health Resources and Services Administration’s (HRSA) Division of Transplantation received a $2 million increase to $25.5 million.  Its’ Bureau of Primary Care received $1.625 billion, an increase of $135 million.

To top it all off, eight-year-old Fore Putnam made his mark by bringing CKD to the President’s desk while advocating for his father, who is seeking a kidney transplant.  Having written President Trump, he received a reply from the White House which led to an interview on Fox and Friends where he made a personal plea for a living kidney donor.

Not all our accomplishments were at the national level.  Advocates in numerous states – including in Pennsylvania, Maryland and Arizona – worked with their governors and state legislators to improve awareness of CKD by issuing proclamations to celebrate kidney patients and living kidney donors.

On March 27th, Maryland’s state legislature passed significant legislation (HB 96) to help living organ donors.  This legislation, supported by the National Kidney Foundation, will provide living organ donors a state tax credit up to $7,500 for the unreimbursed cost of travel, lodging, and lost wages because of donation.  Are you interested in what your state’s benefits are for living donors?

The crown jewel of our advocates’ state activities was in Idaho.  With the support of the National Kidney Foundation, two patient advocates worked with their state legislature to pass legislation (S.1302) protecting living organ donors from insurance discrimination based upon their status as an organ donor.  This legislation, based on the Living Donor Protection Act (H.R. 1270), is the first of its kind in the country.


Marty Durand, transplant recipient, Sen. Cherie Buckner Webb, sponsor (D, Dist. 19, Boise), Idaho Gov. Butch Otter, Alex Fox, Kidney Advocacy Committee Member, NKF, Rep. Sally Toone, House floor sponsor (D, Dist. 26, Gooding)

April is Donate Life month.  What accomplishments will kidney patients achieve this month?  Are you willing to make your mark on CKD policies?  Contact us if you would like to join us in our mission!

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The Doctor-Patient Relationship: How it Impacts Care

Bradley A. Warady, MD, Director, Division of Pediatric Nephrology, Children’s Mercy Kansas City

Dr. Warady and patient .pdfWhen I started practicing medicine more than three decades ago, it wasn’t uncommon for a doctor to tell his patient – this is what you need to do to get better- and assume that the directive would be carried out. There wasn’t a two-way conversation or feedback from the patient and family that was taken into consideration when devising the treatment plan. But times have changed. Now, with an increased emphasis on family engagement and the doctor (healthcare team) – patient relationship, and acknowledgement of the importance patient and family input has on medical decision making, a new and better treatment paradigm is taking shape.

Practical Management Recommendations

Families can play a critical role in determining optimal treatment recommendations by sharing aspects of their everyday lives with healthcare team members and prompting management decisions that have the best possible chance of being successful. The information to be shared can address a variety of issues. Does the child live in a one or two -parent household? Do the parents work at night or during the day? What is the school and after school schedule of the child? All of these factors and more often come into play. If this information is not shared with providers, patients and parents may leave their physician’s office with the best intentions, but in reality they can’t carry out the recommendations. The medical process, especially as it pertains to complex pediatric care, needs to incorporate recognition of the demands that families encounter each and every day. Patients and families should be encouraged to share those demands.

This type of individualized care isn’t easy. It takes work and commitment from both sides. But once families and providers agree upon a treatment plan which can realistically be implemented, the benefits of the time spent become apparent and families soon recognize the healthcare team’s commitment to work with them as partners and not merely as patients or even “customers”.

Surveying Patients: Why Feedback is Important

One of the ways we obtain feedback from our patients and families in our Division of Pediatric Nephrology, is by regularly evaluating their satisfaction with the care we provide every time they leave our clinic. We ask if we have met or exceeded their expectations. Patients and families should feel free to share their opinions when given the opportunity as the information they provide not only helps us learn what we’re doing right, but it also can highlight issues that require attention to improve the care that we provide.

Embracing The Patient’s Perspective in Health Care

The goal to continually improve the provider-patient relationship isn’t exclusive to Nephrology. Appreciation of the challenges that patients and families are confronted with and the need to actively partner and communicate with one another to achieve the best possible outcomes is a practice philosophy that should be embraced in all of areas of health care. Providers need to make every effort to actively engage children and their families, since they so often can contribute to the solution for problems that exist. At the same time, families need to recognize how much the healthcare team values and depends on their input. Tackling challenges and generating answers together helps overcome obstacles and positively impacts care.

It takes a multidisciplinary team of doctors, nurses, psychologists, dietitians, pharmacists, Child Life specialists, social workers and others working together to provide the best possible care to kids with complex disorders. Patients and families may not be used to being asked by their providers to be members of that team and to help determine strategies that work. Thankfully, that paradigm is changing.

Learn more from the National Kidney Foundation about Advocacy in Action. Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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Saving a Child’s Life

By Alex Fox, NKF Kidney Advocacy Committee Advocate

I am a living kidney donor. On May 31, 2016, I was blessed with the opportunity to give one of my kidneys to the sweetest, special needs 15-year-old I have ever met. How did that happen? How is she doing today? Let me answer those questions.

alexdarienneIn October 2015, I saw a post on Facebook from the sister of a woman with whom I went to school. It was a plea for a kidney donor. I was moved enough to reach out to that mom and say I was willing to be tested for her daughter. At that time, two of her family members were in the process of being tested. During January 2016, she messaged me and let me know that the two candidates didn’t work out.

That’s where my journey began. 

I was tested, prodded, poked and honored to find out that I was a perfect match for her. Darienne calls me Uncle Alex now. We have a bond that is just plain amazing. I visit her often when I travel back to Utah where the transplant took place. In the Summer 2016, I reached out to the NKF to see what I could do, and I went to go to Washington D.C. last March to speak about living organ donation.

It is so important that we make sure that living donors are protected in their jobs when they are recovering from giving the gift of life. Luckily, I had an employer that not only allowed me the time off, but they even paid me while I was down. Not everyone is so fortunate, which is why I advocate on behalf of legislation like the Living Donor Protection Act. Please help me support this bill by writing your legislators. I’m very grateful for the opportunity that I have of spreading this message. heroes park

As a follow up, I was notified last summer that I was selected to be included in a local  park as a Hero. The park is called, “Heroes Park.” I was chosen by a local high school to have my face be one of five included around the perimeter of the park. On March 15, 2018, there was an official ceremony at the park where I shared my message about living organ donation.

May you all be blessed in your time of need and may find your “hero” should you ever need it.  In the meantime, consider being someone else’s!

Learn more from the National Kidney Foundation about Advocacy in Action. Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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