Kidney Walk T-Shirt Quilt Tells a Story

Keepsake Theme Quilts created a custom Kidney Walk T-shirt quilt for Paulette Burks, development manager with the National Kidney Foundation serving Central Ohio. 

Paulette Burks

Paulette Burks

My Kidney Walk T-shirt Quilt tells a story centered around my three heroes: William Diggs (Grandfather), David Anderson (Uncle), & Dr. Samuel Collier Sr. (My Boyfriend’s Father). Each of their journeys is different but all of them have two common factors: chronic kidney disease & me!

I first joined the NKF family as an intern in the Cincinnati office in September 2012. As you can imagine I was overly excited to work for an organization whose mission was my passion. My grandfather was on dialysis most of my life and passed away from CKD when I was 12. Three years later my uncle was told he was in renal failure and needed to begin dialysis immediately. By the time I was an intern my uncle had been on dialysis for 7 years. I knew what CKD was and its effects on my family but I wanted to learn more.  My time as a development intern provided me the opportunity to gain more knowledge on this disease and I will forever be grateful.

Unfortunately, I couldn’t remain an intern forever so I began my search for a position with the National Kidney Foundation! I didn’t find any opportunities with NKF by the time I graduated so I ended up taking a for profit position.  BUT in September 2014 I was offered a temporary position as a Program Assistant in the Columbus, OH office! I wanted to work for NKF so bad that I risked everything by leaving a full time permanent position just to be with the organization I loved.  A few months later I met my boyfriend at a holiday party! He asked me what I did for a living and of course I went on a rant about NKF and how important it was to me. He smiled and said ironically my father is in renal failure tell me more. Since that day we’ve been inseparable all thanks to a little CKD connection.

I’ve had many ups and downs during my time with NKF. I became a permanent employee as a Program Manager who transitioned into a Development Manager. I’ve watched Sam’s dad battle this disease with many complications that have put him in and out of the hospital. Lastly, I was lucky enough to receive a call on Wednesday, May 6th, 2015 when my uncle received a kidney!

My quilt represents my journey from a volunteer, intern, and employee of the National Kidney Foundation. It is a daily reminder of the three men I personally advocate on behalf of. I am so happy that Keepsake Theme Quilts were able to bring my vision to life. Keepsake ThemeQuilts has supported NKF with our Cooking with the Stars silent auction and we appreciate their generosity.


Philly’s Native Hip Hop Artist, Freeway, Walks With Purpose

More than 3,500 people took a lifesaving step in the fight against kidney disease by participating in the National Kidney Foundation’s 14th Annual Kidney Walk on October 11th. This year’s Kidney Walk was hosted by former Roc-A-Fella Records artist and Philadelphia native MC, Freeway.

Freeway Ribbon Cutting

“My experience at the 14th Annual Kidney Walk was wonderful and the love I received from the people was breathtaking,” said Freeway. “I feel as though it’s important to educate people on early detection of kidney disease and awareness. I will continue to spread the message and I am looking forward to more events like this.”

Last month, without warning, the 37-year-old State Property MC and North Philadelphia native was diagnosed with kidney failure.

“I had a routine physical with my primary care doctor,” Freeway said. “The next week, I got a call from my doctor who told me to get to the closest emergency room because my kidney levels were off. My kidneys were failing and I didn’t even realize it. I was in tears trying to understand it all.”

Freeway is committed to raising awareness of kidney disease and ensuring Philadelphians stay on top of their kidney health.

Team Freedom Fighters

Team Philadelphia Freedom Fighters

The event, held at the Philadelphia Art Museum raised more than $400,000 to help fund awareness, prevention and treatment programs aimed at bettering the lives of kidney patients, their families and those at risk.

For more information or to participate in a Kidney Walk near you, visit To learn more about kidney disease, risk factors and ways to protect your kidneys, visit,

The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk. Learn more about kidney disease and the Kidney Walk at

View footage from NBC10 of Freeway at the Philadelphia Kidney Walk here: Rapper Freeway Raises Kidney Disease Awareness at Philly Kidney Walk

Making Life Better for Those Living with Kidney Disease

Inspired by Making Life Better for Those Living with Kidney Disease: Satellite Healthcare’s National Team at the NKF Kidney Walks

Satellite Healthcare teams made their way step-by-step through the U.S. participating in the NKF Kidney Walks.


Staff from WellBound of Evanston in Skokie, IL, had a great time at the Chicago walk!

More than 30 teams with almost 600 team members raised awareness and funds at 11 walks from California to New Jersey. These teams formed the Satellite Healthcare National Team lead by President and CEO Rick Barnett.

Satellite Healthcare’s Tennessee team at the Memphis walk.

Satellite Healthcare’s Tennessee team at the Memphis walk.

“Satellite Healthcare was founded on the mission that we could offer a full quality of life to those living with kidney disease. The Kidney Walks give us the opportunity to be a leader in the CKD community alongside NKF. Our National Team is a great representative of Satellite Healthcare’s mission and values based on community, respect and excellence,” said Rick.

Satellite staff in Arizona enjoyed the Phoenix walk with their little ones.

Satellite staff in Arizona enjoyed the Phoenix walk with their little ones.

Satellite Healthcare has been a strong supporter of NKF for more than 40 years thanks to the unwavering passion its founder Dr. Norman S. Coplon had for patients with kidney disease. Under the leadership of Dr. Coplon, Satellite sold anything and everything, including pom poms at sporting events, in support of NKF.

In honor of its founder, at each walk this year the Satellite Healthcare teams passed out pom poms.

Left: Dr. Coplon with one of his famous pom poms at an NKF rally. Right: Across the country, Satellite honored Dr. Coplon with pom pom giveaways this year.

Left: Dr. Coplon with one of his famous pom poms at an NKF rally. Right: Across the country, Satellite honored Dr. Coplon with pom pom giveaways this year.

Participating and providing multi-market support of the Kidney Walks is just one example of the not-for-profit’s philanthropy in the CKD community. Satellite Healthcare has a well-recognized, enduring commitment to philanthropy and the CKD community, from funding millions of dollars in research grants to sponsoring kidney walks nationwide.

Dr. Coplon’s family continue to serve as active members of the Satellite family. Above: His wife, Sandy, and his dog, Yonkel, enjoy the first East Bay Kidney Walk.

Dr. Coplon’s family continue to serve as active members of the Satellite family. Above: His wife, Sandy, and his dog, Yonkel, enjoy the first East Bay Kidney Walk.

Satellite is committed to advancing the standard of chronic kidney disease care so patients can enjoy a better life.

For more information about Satellite Healthcare’s founder and commitment to NKF, visit the Norman S. Coplon Memorial Fund.

Two Dialysis Centers, One Kidney Walk Team

Inspired by Team Work: Satellite Healthcare at the NKF Kidney Walks

Half Orange plus half Laguna Hills, equals one dynamic Satellite Healthcare Kidney Walk team called Orange County Half and Half.

“We were all a team doing this together,” Team Captain Candice Brewer said of her team that included Satellite Healthcare’s Orange, Calif. dialysis center and Satellite Healthcare’s Laguna Hills, Calif. dialysis center.

As a Charge Nurse at the Orange dialysis center, Candice knows the importance of working together for a common goal. Every day, she works with dialysis patients and a skilled team of nephrology nurses, social workers, dietitians and patient care technicians.

Their goal in the Satellite Healthcare centers: Making Life Better for Those Living with Kidney Disease.Their goal for the Orange County NKF Kidney Walk: $4,300

Fundraising toward their goal

The team, Orange County Half and Half, reached and then exceeded their walk goal thanks to every team member’s efforts. This included restaurant fundraisers, a recycling program, social media and simply asking for help.

Every bit counts! Orange County Half and Half began collecting items to recycle months before the walk.

Every bit counts! Orange County Half and Half began collecting items to recycle months before the walk.

“I talked to staff and patients individually about it whenever I could. One patient raised over $600 himself and I was just amazed and surprised that he was getting so involved,” Candice recalled.

Cathy Wilson-Bates, an active team member, followed Candice’s lead, raising $800 in her first week.







Satellite Healthcare Orange and Satellite Healthcare Laguna Hills staff and their families enjoyed bonding time during a team restaurant fundraising event.

“Candice’s energy and excited-ness would just spread throughout the centers. It was a chain reaction,” Cathy said.

The team grew stronger thanks to the support of NKF’s local office, which held regular team captain group calls, walk kickoffs and visited each of the team’s centers in Southern California.

“NKF’s support helped me overcome any challenge I came across, and helped me understand how best to reach out to people. NKF’s inspirational walk video and stories made me feel like my heart was more involved,” Candice said.

One big family

Even patients and their families were excited for the walk!

Even patients and their families were excited for the walk!

As the heart of the two-center team, Candice saw the team become one big family as staff, patients and family members joined in.

“The patients felt, ‘Wow, they’re really connected.’ They didn’t see it as Laguna Hills and Orange. The patients saw the comradery and how positive that was for the greater good,” Cathy observed.

Patients on the team were proud to raise awareness about kidney disease in their community by walking alongside their dialysis center care team. That team includes dialysis nurses, patient care technicians, renal dietitians and social workers. The care team at Laguna Hills and Orange provide dialysis services through hemodialysis and peritoneal dialysis.


Satellite Healthcare: A part of the CKD Community

The Orange County NKF Kidney Walk was the culmination of all their hard work, and it was evident to all who put their walking shoes on.

“Attending the Kidney Walk in Orange County was a blast. I enjoyed being a team member of this strong and successful group of individuals who came together to raise funds for and awareness of kidney disease. Our Satellite Healthcare team exemplified our company’s mission and values. We are so proud to be a part of this CKD community,” said Robin Maita, Regional Vice President at Satellite Healthcare, who was one of the 91 Orange County Half and Half team members.

Half and Half team members taking a selfie at the Satellite booth.

Half and Half team members taking a selfie at the Satellite booth.

Satellite Healthcare, a not-for-profit provider of kidney dialysis services, has been a strong supporter of NKF for more than 40 years. The Satellite Healthcare National NKF Kidney Walk Team participates in 11 walks through about 30 local teams.

Satellite Healthcare has a well-recognized, enduring commitment to philanthropy and the CKD community, from funding millions of dollars in research grants to sponsoring kidney walks nationwide. Satellite is committed to advancing the standard of chronic kidney disease care so patients can enjoy a better life.

To learn more about what Satellite Healthcare, a leading nonprofit provider of kidney dialysis and related services, is doing to shape our industry and elevate the standards of patient care and innovation, visit

Kidneys are the coolest!

Kidneys are the coolest! Healthy kidneys clean out toxins, keep blood pressure under control and make strong bones. They also make pee. And who better to sing about the importance of having a pee test than these lovable kidneys? Watch the video and share it with everyone you care about.

Learn more about urine and kidney health at Any questions, please contact

A Rare Occurrence

Amen kids

Elizabeth, Matthew, William & Alex Thanksgiving 2014

Alex is just like any other 6-year-old: He attends kindergarten, plays soccer and baseball, enjoys riding his bike, and often can be found outside running around with his triplet brothers and older sister.

But Alex isn’t like other 6-year-olds. He suffers from chronic kidney disease.


Alex was born with one kidney, his left. As identical twins, he and brother Matthew split a pair of kidneys — Matthew has only the right kidney — a rare occurrence that doctors term a mirror anomaly.

Alex, Matthew & William on their birthday

Almost immediately after birth, Alex was diagnosed with a valve that blocked his ureter, which was damaging his solitary kidney. Because he and his brothers were born seven weeks premature, he was too little to have corrective surgery. So at 8 days old, he had surgery to circumvent the problem, then had surgery at 9 months old to remove the valve. Still, doctors informed us his kidney likely would never operate at full function and that, if his condition worsened, he could face the possibility of dialysis or transplantation later in life.

His chronic kidney disease is magnified by an issue with his bladder, discovered last year. While we have faith in his doctors and are encouraged by his treatments, we pray every day that his condition improves. At stage 3 kidney disease, he has no symptoms yet, and he’s the toughest person in the house.

Shortly after the boys’ birth, we had hoped to get involved with the National Kidney Foundation. We felt powerless to improve Alex’s condition, so we wanted to do anything we could to contribute to the search for a cure. But like most parents, we quickly became overwhelmed — times three!

Alex's A Team

Alex’s A Team at the Pittsburgh Kidney Walk

Alex Amen soccer game face

Alex at his soccer game

Finally, last year, we signed up for the Pittsburgh Kidney Walk. We were taken aback by the outpouring of support Alex received. That, coupled with the incredible people at the NKF Greater Alleghenies chapter such as Erin, Melissa and Jade, only strengthened our resolved to remain deeply committed to the cause. Since then, we have been fortunate enough to be invited to the Pittsburgh gala fundraiser and address the local board. In such a short period, we have met incredible people and have renewed hope for Alex.

Alex just recently had his check-ups with his nephrologist and urologist, and doctors remain optimistic about his progress.

Just in time, too. Alex’s soccer and baseball teams start play this week.

— Rob and Keightley, Alex’s parents

Kidney Walkers Take Capitol Hill

In total, 100 advocates had meetings with 150 representatives and their staff members. Advocates shared their stories with Congressmen and pushed for legislation protecting kidney patients and donors. Advocates also talked about kidney disease awareness, immuno drug coverage, research, organ donation & more.

Among the 100 kidney patients, donors, and family members participating in the 2015 Kidney Patient Summit, many of the advocates have also been involved with the Kidney Walk. These walkers/advocates include Madi, an 18 year old kidney recipient who has been invited to speak at the upcoming Denver Walk; Jim, who has been involved with the Indiana Kidney Walk; Cody and Maggie, top fundraisers for the 2014 Iowa Walk; Dwayne aka Rusty, a CKD patient and top fundraiser at the South Carolina Kidney walk for the past 5 years; Shannon & Robert, from the NKF Florida office; and Jennifer, a living donor in New Mexico who is working on setting up a Kidney Walk in her area.

Thanks to all our advocates for making the 2015 Kidney Patient Summit a huge success!

The National Kidney Foundation had a staff member on site during the two day Summit to live-blog the event. Here’s a great recap of Day 1 & 2 on Capitol Hill:

2015 Kidney Patient Summit – Day 1, Washington, D.C.

Posted on March 2, 2015 by nkf _advocacy

We’re live blogging for the 2015 Kidney Patient Summit in Washington D.C. Check back for regular updates!

8:20pm – That’s a Wrap for Day 1

Day 1_820pmThe advocates have finished up day 1 of the 2015 Kidney Patient Summit and are now getting rest for a long day of congressional meetings. Stay tuned for tomorrow’s live blogging from Capitol Hill. Patients will be meeting with their representatives and taking action for all the nation’s kidney patients and organ donors. Read the day’s news and find out how you can get involved in kidney advocacy below, or sign up to take action at

6:30pm – Meet the Advocate

Sarah K. Finlayson – Kidney Recipient

Day 1_630pmSarah Finlayson, from Peabody, MA, has dealt with kidney disease for 45 years. After being diagnosed at two years old, she was one of the first people in the United States to undergo peritoneal dialysis. She has since had two kidney transplants and continues to share her story with other patients as a peer mentor for the National Kidney Foundation.

Here is a letter Sarah wrote to newspapers in her community before she came to D.C. for the 2015 Kidney Patient Summit:

A few months past my second birthday, I was diagnosed with Focal Glomerulosclerosis a rare kidney disease with no cure. This was over 45 years ago, in a time when child kidney transplants and peritoneal dialysis were merely theoretical. 

While most kids are riding bikes, I began a daily regimen of hemodialysis. For over 45 years, I’ve battled kidney disease and cancer. I’ve been on hemodialysis, peritoneal dialysis and have received and lost a transplant.

My story has a great ending. I received a second, successful kidney transplant from my younger sister in 2005 and I have been healthy since that day.

I have been through a lot, but I want to let your readers know that there is hope and there are actions they can take to support those with kidney disease and organ transplants.

On March 2-3 I will be traveling to Washington D.C. to speak to representatives as part of the National Kidney Foundation’s Kidney Patient Summit. I will be urging legislators to fund research, protect kidney patients and raise awareness of kidney disease. I hope your readers will support my trip by signing a petition at

Through the research, education, hard work and most importantly – community – we can ensure a better future for kidney patients and organ recipients. By spreading this message we can also let others know, they don’t have to go through this journey alone.

4pm EST – What You Can Do, Today!

Day 1_400pmEven if you’re not in D.C. for the 2015 Kidney Patient Summit, there are things you can do today to advance the kidney cause:

  1. Improve early diagnosis and management of kidney disease. Ask your representatives to include a provision in the draft 21st Century Cures Bill to address 21st Century Chronic Diseases that specifically directs the Secretary of Health and Human Services to conduct a study on diagnosis, progression and outcomes in Chronic Kidney Disease (CKD). This will help our nation’s healthcare professionals identify, monitor and treat kidney disease.
  2. Ask for an increase in funding for the National Institute for Diabetes and Digestive and Kidney Diseases(NIDDK). Contact your representative on the House and Senate Appropriations Committees and ensure funding for kidney disease research at the NIDDK is increased by 6% over the President’s proposed budget.
  3. Strengthen the Medicare ESRD program for kidney patients! Ask your representative to support: a) The Chronic Kidney Disease Improvement in Research and Treatment Act (S. 538/HR 1130) to allow dialysis patients the choice to enroll in Medicare Advantage, which has caps on the amount we can be required to pay out of our own pockets for medical care. b) Extend Medicare coverage of immunosuppressive drugs for the life of the kidney transplant. Currently, Medicare coverage ends 36 months post transplant for those under age 65.
  4. Help protect living donors by asking your representative to cosponsor the Living Donor Protection Act when it is reintroduced by Representative Nadler (D-NY) this year.  This bill will prohibit insurance companies from discrimination against living donors and will extend employment protection to living donors under the Family Medical Leave Act.

    Day 1_4_00pm

    Tonya Saffer, Senior Health Policy Director, talks about the key issues for advocates to address at the Kidney Patient Summit. 

3pm EST – Why We’re in D.C.

Day 1_300pmDonors, recipients, kidney patients and their family members are in D.C. to urge legislators to fund research, protect kidney patients and raise awareness of kidney disease.

Why is this important? According to new research, reported in this Washington Post story today, experts are predicting that half of U.S. adults could get kidney disease in their lifetime. Kidney disease is an urgent problem our leaders need to address!

You can be part of the solution by signing up to join our advocacy network.

2pm EST – Meet the Advocate

Ted Garding – Organ Donor

Day 1_200pm

            Ted Gardin – Eagan, MN

Ted Garding of Eagan, MN woke up on Easter morning in 2010 and read an article about living organ donation in his local paper. The thought suddenly struck him:

“This is something I am healthy enough to do.”

Garding registered to be an undirected altruistic donor, and gave a kidney to a 28-year-old man from Wisconsin.

“It was the most rewarding and educational experience I have ever had,” he said.

The man who received the kidney told Garding after the donation that he had been sick his whole life, and finally knew what it was like to feel well.

“That was the best gift I’ve ever received,” Garding said. “I’ve gained a new friend, and I’ve never felt better mentally and physically in my life.”

Now Garding is actively involved with the National Kidney Foundation, spreading awareness of kidneys and kidney disease by giving Your Kidneys and You presentations, and becoming an advocate at the 2015 Kidney Patient Summit.

“If I had never seen that article, my donation would never have happened,” Garding said. “That’s why I think awareness is so important. People should be aware of organ donation and aware of the disease itself. That’s why it’s a pleasure to be part of the NKF’s advocacy summit.”

2015 Kidney Patient Summit – Day 2, Washington, D.C.

Posted on March 3, 2015 by nkf _advocacy

Welcome back to the live blog for the 2015 Kidney Patient Summit in Washington D.C. Read all about Day 1 here and check back for regular updates!

8:30pm – That’s a Wrap, Here are our Highlights!

The 2015 Kidney Patient Summit was a huge success! Scroll down to read the day’s activities (day one activities can be read here), and join our advocacy network to build the momentum around kidney issues. Check back tomorrow for a roundup of our advocates’ social media posts. And finally, here are the highlights from NKF’s government relations experts:

Tonya Saffer, Senior Health Policy Director, NKF
Day2_830pm“My highlight was our very last meeting with Sen. Chuck Grassley of Iowa. He actually came in and spoke face-to-face with our advocates. Afterward, Grassley’s health policy advisor told the advocates how important their work was and encouraged them to keep talking about the issues they believed in. It meant so much to hear that our advocates were inspiring their representatives. 
It’s important for everyone to know this is not a one-time thing. Everyone should follow-up with their representatives, let them know your issues and keep following up throughout the year. Join our advocacy network for more information on how you can advance kidney causes.”

Troy Zimmerman, Vice President, Government Relations, NKF
Day 2_8_30pm“We had a few minutes with congresswomen Susan Brooks of Indiana’s 5th District. She spent about five minutes with us and asked informed questions about kidney disease. She also spoke with one of our young advocates about being a pediatric kidney patient. She seemed really interested in the issues. The Congresswoman is on a health committee with the House of Representatives, so there are exciting opportunities to work with her going forward. 
The advocates were thrilled to connect with other people who share their same passion for the cause, and it was empowering to have them visit with their representatives and make their case on Capitol Hill.”

6:30pm – Director of NIDDK speaks at Kidney Summit

Day 2_630pmDr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is the keynote speaker at the Congressional Reception.

“We’re not only slowing the progress of kidney disease, but we’re looking at ways to reverse it, even with limited budgets,” he said. “If we don’t do it now, when are we going to do it? We’re making progress toward a cure, an eventual cure for this devastating disease.”

You can view his PowerPoint presentation about kidney disease in the United States and the work of the NIDDK by clicking this link.

6pm – The Kidney Patient Summit Congressional Reception

Day 2_600pmAfter a long day of congressional meetings, the 2015 advocates are settling in for the 2015 Kidney Patient Summit Congressional Reception. Bruce Skyer, CEO of the National Kidney Foundation, kicked off the reception with a warm welcome to the advocates and government representatives in attendance.

Jummy Olabanji, an anchor at ABC7 in D.C., is the master of ceremonies. She found out she had a genetic kidney disease after going to the doctor for high blood pressure. She’s also doing something about it — she changed her diet and has started running to keep her kidney disease in check.

“My kidney disease it is genetic, but for so many Americans it can be prevented,” she said. “Collectively, we can all get something done to change to course of kidney disease.”

Kevin Longino, who chairs the National KidDay 2_6_00pmney Foundation’s advocacy committee, has a family history of kidney disease. Even knowing this, he was living a life with “too much coffee, too much protein and 60-80 hours of work a week”.

“Basically, I was doing everything wrong. The doctor said with the path I was on, I would need a transplant within 6 months,” Longino said. “I changed my lifestyle and I was able to postpone the need for dialysis for four years. I am a big believer in awareness of kidney disease and I am impressed with all the other organizations here that are supporting research and awareness of kidney disease.”

4:15pm – Meet the Advocate

Q and A with Drew Taylor of Indianapolis, Indiana

Day 2_415pm

Q: Tell everyone a little about your story
Drew: “I’m a kidney patient. I was diagnosed with Alport Syndrome at the age of 6. I was getting medication and feeling better, but I went into kidney failure. Now I’m 11, almost 12, and I am on PD dialysis.

Q: How is it being young and on dialysis?
Drew: It’s hard, but as long as you do what the doctors tell you you’ll be fine! I can’t swim in rivers, lakes or oceans, but I can do pretty much everything else.

Q: What are you advocating for?
Drew: Kidney disease is very important issue and it affects many people. We want more funding for kidney disease research. Many doctors don’t know about Alport Syndrome, there is a lot of research that needs to be done still.

Q: How is it participating in the 2015 Kidney Patient Summit?
Drew: It’s pretty fun! I’m here with the Alport Syndrome Foundation. We went around and got to talk with a bunch of different people and after lunch we got a tour of the Capitol! I think it’s really cool, because not only was I able to come here and see sites, but I am able to be heard by very important people who represent my state.

3:30pm – Rescheduling Dialysis to Participate in D.C.

Day 2_330pmNothing will keep Curtis Cotton, of New York, NY, from participating in the 2015 Kidney Patient Summit.

Curtis has been on in-center dialysis since his kidneys failed due to high blood pressure in 2001. Today he is supposed to be on dialysis, but he is missing his regular treatment schedule to participate in Capitol Hill meetings with his local representatives.

“I’m missing my treatment today,” he said. “I will be back on dialysis tomorrow, but to me this is important and we need to recognize and participate.”

The 2015 Kidney Patient Summit has exposed Curtis to a world of new ideas and people. He has met his first living kidney donor, and countless other who have different kidney diseases and causes.

“It’s been good to see some of the other faces of kidney disease,” he said. “Kidney patients need to be more active and find out what’s going on in the kidney community and how they can help. There’s no excuse for not getting involved!”

2pm – Colorado is for Kidney Advocates

Shar Carlyle of California and Haley Newkirk, Madison Ferner, Stacy Ferner and Sally Reif of Colorado met with Curtis Swager, Legislative Director for Cory Gardner of Colorado.

Day 2_200pmThis has been an eye-opening experience for Madison Ferner, 18 (in photo, top left, head of table). Madison has FSGS, she has undergone every type of dialysis and has received two kidney transplants.

“I am going to major in political science at Colorado University next year, so this has been amazing for me,” she said. “I’ve learned so much about other diseases and perspectives from patients too. I’m honored to be here on Capitol Hill making a difference for kidney patients.”

12pm – Advocating for Immunosuppressive Coverage

JoAnn Villanueva, Bill Ruff and Suzanne Ruff on Capitol Hill

Day 2_1200pmSuzanne donated a kidney to her sister JoAnn. They met with Katie Talento, Legislative Director  for Senator Thom Tillis of North Carolina. They discussed immunosuppressive medication coverage under Medicare.

“Katie agreed with us that 36-month coverage for immunosuppressant medications under Medicare was archaic, and didn’t make financial sense when you realize the cost of having to put someone back on dialysis if they lose their transplant” said Bill Ruff.

For JoAnn, it was an emotional moment asking for Senator Tillis’ support.

“I was crying with Katie, because I am so passionate about extending coverage of immunosuppressive drugs,” she said. “If I stopped taking these medications, I would undo what Suzanne did, and she saved my life.

10:30am – First Meetings

Day 2_1030amAlice Thurston, Washington, DC, AAKP, has post-strep glomerulonephritis and has had three transplants

Wanda Pierson, East Point, GA, NKF, has glomerulonephritis 

Walt Hunt, Acworth, GA, is a patient with polycystic kidney disease (PKD)

Three advocates are speaking with John Eunice, General Counsel for Senator David Perdue of Georgia. They are presenting their case for their specific issues:

Alice is pushing the Living Organ Donor Protection Act. “I’m here because my brother, he has two five-year old twin boys, and he is subject to potential discrimination for long-term care and disability insurance because he was a living donor. I would like to see him protected.”

Wanda wants everyone to learn more about kidney disease and the issues around kidney disease. She was diagnosed two years ago, and didn’t know about kidney disease. “Both my parents passed away from cancer, everyone knows about cancer, but people don’t know about kidney disease.”

Walt Hunt, is pushing for an increase in basic research and trial work around kidney disease. His pitch is for an additional $2.1 billion for kidney disease studies through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). He would also like Senator Perdue to support Medicare coverage for transplant recipients, “That would provide medications under Medicare for kidney recipients to keep their organs.”

9am – 10-Year Kidney-versary on Capitol Hill!

Sally Reif, Centennial, CO, living donor
Shar Carlyle San Rafael, CA, PKD patient and kidney recipient

Day 2_900am

             Shar Carlyle and Sally Reif

On March 2, 2005, Shar Carlyle received a kidney from Sally Reif. At the 2015 Kidney Patient Summit, they are celebrating the tenth anniversary of their transplant procedure.

The pair met in a way that was new and unusual ten years ago — online. Shar had originally posted her profile on the newly created website Matching Donors, which attracted Sally’s attention for a school project.

“I was doing a paper for school on internet ethics, and thought the topic of organ donation would be interesting to pursue. That’s how I found Shar,” she said. “Initially, I called to ask about the process and found out her father and brother had both died from PKD… I decided to get tested and was a match.”

At the time, finding donors over the internet was rare, and many hospitals had policies against performing transplants on people who had met online. Nevertheless, the pair proceeded with the transplant. Both are healthy and well today. You can read more about Shar’s journey in this Mercury News article, and you can read about Sally’s decision to be a living donor in this Summit Daily article.

Shar describes herself as a “crunchy liberal”, while Sally would do just about anything to “get a Republican vote”. They are a testament that kidney issues transcend political lines and are living proof that friendships are stronger than politics.

“It’s something we can come together on. We are united to help kidney patients and improve quality of care and access to medications,” Shar said.

Both have done their part to advance the kidney cause. Sally has helped convince others to be living donors, while Shar volunteers for the PKD Foundation and NKF. She also conducts an educational program about kidneys and organ donation in under-served communities.

“She’s really using my kidney well,” Sally said.

8am – Coffee and Excitement

Day 2_800amIt’s going to be a big day on Capitol Hill. Advocates are getting ready, signing banners, finalizing meetings, and drinking plenty of coffee for the 12+ hour day ahead.