About kidneywalk

National Walk Manager for the National Kidney Foundation

Meet Danny…

Written by Danny, a 2014 Kidney Walk National Ambassador. 

 IMG_1298I’m Daniel, twelve years old, born in a suburb of Detroit, Michigan and I have Chronic Kidney Disease.

Even before I was born, the doctors saw a potential problem with my right kidney during a routine ultrasound. My mom had to have a lot of ultrasounds so the doctors could keep an eye on things. Right after I was born, the doctors checked me out, did an ultrasound on me, and gave me the all clear. Everyone thought I was healthy and had two normal kidneys. That lasted for seven weeks.IMG_1330

It turns out that the tube extending from my right kidney to my bladder was bent – really bent. Tied up in knots kind of bent. As a result, my right kidney didn’t work at all and the damage had an effect on my left kidney as well. My left kidney is just too small to do all the work it is going to need to do to keep me healthy as I grow. I have to keep a habit of drinking more than the average amount of water per day, and I go to the University of Michigan Children’s Hospital for blood draws and clinic visits every few months. I also get an injection every evening of growth hormones so that I will grow like other kids. I know that I am going to need a new kidney one day but my parents are making sure that I get to have a normal childhood – I even went to sleep away camp for an entire month! The nurses took great care of me and, except for the contact sports I got to participate in all the activities.

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Shortly after the diagnosis, my mother learned of the National Kidney Foundation, and its local branch, the National Kidney Foundation of Michigan. I have taken part in the Detroit Kidney Walk since the age of three but only began fundraising outside of my immediate family three years ago – my parents thought it was importan t that I understand the value of money before asking others to donate. In the last few years my family, friends, and even strangers have helped me raise over $25,000 to help kids and adults like me everywhere.

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Stay tuned in for more blog posts written by Danny throughout the the year.P1000251


School Unites Around Transplant Teacher

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It wasn’t Physical Education that had children at Barrow Elementary walking around the track in circles. The miniature Kidney Walk was in honor of 2nd grade teacher Nicole O who received a kidney transplant in 2013.

“A lot of the kids wanted to do something to show they care,” said Barrow Elementary teacher Tracey H. “Everybody at school loves Nicole, and this is a good way for kids to learn about their kidneys and show their support.”

Nicole, who lives outside of Brazoria, TX underwent the kidney transplant operation in 2013 after her kidneys failed due to a genetic kidney disease. In order to get the kidney, her husband, Eric, participated in a three-way kidney swap with other individuals in California and Missouri.

“Everything fell into place perfectly,” said Nicole of the procedure. “I felt so good afterwards that I was ready to go to work the next day.”

Now that both Eric and Nicole have fully recovered, the transplant has given Nicole the opportunity to participate in research studies that could help other transplant patients. It has also revealed to her just how widespread kidney disease is in her community.

“Since this happened, I’ve talked to a lot of people and realized that kidney disease is more common than I ever thought,” Nicole said. “I have friends who have relatives going through dialysis, you just don’t hear about it every day.”

Nicole is taking her story of hope to the Kidney Walk to support others with kidney disease and fund kidney disease research. She is honored that her co-workers and students have also stepped up for the cause, raising over $3,000 for the National Kidney Foundation.

“The school, students and everyone have been amazing and so supportive,” she said. “It’s been such a remarkable experience.”

 

HP Tops Kidney Walk Fundraising in 2014!

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Hewlett-Packard (HP) employees have redefined what it means to make a difference by becoming the top corporate Kidney Walk team for the second consecutive year.

In May and June, over 200 HP staff and family members registered for the Silicon Valley and San Francisco Kidney Walks and together raised more than $52,000 to support the awareness, prevention and treatment of kidney disease. Their hard work fighting kidney disease in the Bay Area has set the bar for corporate walk teams across the nation.

HP (1)“The amount of support and enthusiasm that our HP team generated was beyond
my wildest imagination, and it reminded me why I am so proud to work for this company,” said Rebecca Gelenberg, organizer of HP’s 2014 walk efforts. “The employees here truly believe in making an impact in their communities and everyone was so willing to give their time and their money to this important cause.”

For the second year in a row, Team 3Par, a division within HP led by Dan Dias and Dolores Montano, led the pack in fundraising. 3Par successfully raised over $22,000.  Not only did they raise a huge amount of money but they showed up in force with 68 walkers. Independent of employee efforts, HP also contributed $10,000 as a Platinum Sponsor for the Silicon Valley Kidney Walk.

Last year, HP took up the kidney disease cause with gusto, surpassing the previous $35,000 corporate walk fundraising record, while HP CEO Meg Whitman and HP Board Member Ann Livermore were honored as the Bay Area Corporate Walk Chairs. Livermore has a personal connection to kidney disease — she received a kidney transplant in 2005 and has been an advocate for organ donation and kidney disease awareness.

“It’s great to see HP employees build on the momentum and really understand why this is such an important public health issue in our country,” said Livermore, a former HP Executive Vice President. “As a company, HP pledges to Make it Matter. It’s impressive to see HP employees live up to that motto by making a difference in the lives of kidney patients in our community.”

In California alone, more than 55,000 people receive dialysis treatment for kidney failure and 18,000 are on the waiting list for a life-saving kidney transplant. It is estimated that 1 in 9 Californians have kidney disease, and most don’t know it because symptoms usually appear late in the disease’s progression.

HP (3)“Many of us were shocked to learn how prevalent kidney disease is and how many people are impacted either personally or through friends and family,” said Rebecca. “We are proud to get the word out, and to represent the mission of the National Kidney Foundation. The work that they do is so important to our communities, and it is an honor to support them.”

Walking for Zayda

4_zaydaWhen eleven-year-old Zayda starting getting sick in 2011, her mother knew it wasn’t a normal illness.

“I’ve had three kids and I’ve seen a lot of symptoms, but this was different,” said Margarita, Zayda’s mother.

After insisting on numerous follow-up tests, Zayda was eventually diagnosed with ANCA Vasculitis, a condition where her antibodies attacked her kidneys. She had only 14% kidney function left. Doctors were telling Margarita that she should prepare for a transplant.

“We thought transplant was the only option,” Margarita said. “But thanks to organizations like the National Kidney Foundation and the research they support, we are here two years later and still going strong.”

Zayda’s kidney function improved after numerous therapies and medications, and although a transplant is still likely in the future, she is able to do cheerleading and play outside like other youngsters.

Zayda and her family are also able to spread the kidney disease message, whether at school or at the National Kidney Foundation’s Kidney Walk. This is the third year Zayda, her siblings, mother and friends are walking.

“We’re supporting everyone with kidney disease, and teaching people about kidney disease,” Zayda said.

This year, in advance of the Walk, Margarita set up a Facebook page, Going Green for Zayda, where over 150 people wore green to support Zayda in her battle against kidney disease. The gesture brought Zayda to the point of tears.

For her mother, the ordeal that Zayda has gone through, and the tough road ahead, is still a story of hope, one she hopes other parents will learn from.

“People need to really push for their kids and get their kids screened if they think something is wrong.” Margarita said. “Do it before it’s too late.”

Bendix Joins the National Kidney Foundation in a Life-Saving Partnership

r-BendixWhen corporations and nonprofits collide, the relationships are often short and opportunistic.

However, one local partnership has been bucking the trend. The National Kidney Foundation and Elyria-based Bendix Commercial Vehicle Systems have been working together to promote kidney disease awareness for over five years.It’s a relationship that has made a life-saving difference for Bendix employees and local kidney patients. In fact, screenings and information provided by the National Kidney Foundation has led a number of Bendix employees to seek further treatment and medical advice due to having, or being at risk for, kidney disease.

“That’s the way this disease is, it sneaks up on people and those most impacted often don’t realize until it’s too late,” said Amy Solmos Wayne, Regional Director for the National Kidney Foundation. “Across the country, 1 in 3 people are at risk for kidney disease and more than 26 million people have it, while most don’t know it.”

Once Bendix saw the impact of NKF screening programs, it was a natural step that the company also saw the overall benefit of supporting the NKF mission to bring kidney disease awareness, prevention and treatment strategies to patients, professionals and those at risk in the local community.

“We hope this partnership will continue to promote the message of kidney health and the importance of the kidney score to more local organizations,” said Joe McAleese, president and CEO of Bendix. “NKF Serving Ohio has been a significant part of the health and wellness initiative at Bendix and has positively impacted the health of a number of our employees.”

The relationship that began in 2007 developed into a full-fledged corporate partnership that is now supported in large part by Bendix staff.

“As an organization we participate in a number of initiatives in the community,” said Barbara Gould,Director of Communications at Bendix. “Working with the National Kidney Foundation has been one of those commitments we’ve seen grow over the years, thanks in large part to the generosity and dedication of our workforce.”

Bendix employees geared up again this year to support the NKF at the Northeast Ohio Kidney Walk in Cleveland. Bendix’s employee walk team, known as the “Brigade in Blue”, are looking to break last year’s Kidney Walk fundraising record.

“We don’t want to throw down the gauntlet too much, but we are looking to be the top fundraising team for the fourth year in a row,” said Bendix team captain Julia Salvatora. “Last year we had more than 60 people come out without counting the children, and we’re growing bigger every year.”

“YOU HAVE KIDNEY DISEASE”

Written by: Alli Young

Sorry everyone junior year has been hectic! I said I would talk about the modifications that you have to make to live your life to the fullest with kidney disease… so here it goes!

Being told “ YOU HAVE KIDNEY DISEASE” is the moment when your life changes forever. From there are on out you have to change your lease on life. I learned about all these big words like “glomerulsclerosis” and then came the medications. The most drastic change was having to take all of these drugs and not knowing what would happen or even why I had to take them. One thing that helped was knowing that I was in the hands of a very qualified nephrologist. A lot of people don’t even know where to start with how to modify their life so I suggest using kidney.org or anyone that you have connections to and of course, me!

Another modification that you will need to make is diet, some more modifications than others. I had to change sodium, potassium and dairy. I saw a nutritionist within the first month and it helped me greatly. The nutritionist I used was through my team of doctors that my nephrologist set up. WE ARE NOT ALONE. Your doctors will always be there for you. Also, you should use sodium girls YouTube account or use kidney.org for weekly ideas on recipes to create that are kidney friendly. However, even with all these modifications there are side effects especially depression and that is why I am here and the whole kidney community to make your day a little bit brighter with some words of wisdom.

There are 26 million of us and we all our family.  If you would like to speak to me personally please leave your email or a way for me to contact you and I would love to talk. Enjoy May and hope all the mother’s out there had a Happy Mother’s Day!

Greetings from guest blogger Alli Young, a 2014 National Kidney Walk Ambassador!

Written by: Alli Young

Hi everybody my name is Alli Young and I am from New Jersey! At the age of 14, I was diagnosed with Stage 3 Chronic Kidney Disease, specifically Focal Segmental Glomerulsclerosis (FSGS). I was misdiagnosed multiple times and because of that I have had a significant loss of kidney function. I was diagnosed at the beginning of my freshman year and while everyone was picking out his or her first day of school outfits, I was at the doctor’s office trying to figure out how to treat this disease that turned my life upside down. One thing that I have learned in the past two years is that kidney disease does not define me and that it only motivates me to be a better person.

For the past two and a half years I have been volunteering with the National Kidney Foundation. I have raised over $10,000 and formed my own team called Alli’s Army. I love to initiate new relationships with people and motivate them to live life to the fullest. Last year I was the Kids for Kidneys Captain and this year I am the Ambassador of the National Kidney Foundation. Inspiration can only come from within and even when I am having a bad day I turn it around by putting smiles on everyone’s faces. Enough about me what you should really know is that there is a life beyond kidney disease and any disease as a matter of fact. When life gives you lemons you make bright yellow lemonade.

Every week I will be blogging about a different topic on kidney disease and if you have any questions or just want to talk I will always be here for you. Thanks for reading and I can’t wait to learn about your journey and educate you about kidney disease!! Next weeks topic will be about how kidney disease changes your life and what modifications you will have to make to live your life the way you want to live it.

A healthy attitude is contagious but don’t wait to catch it from others. Be a carrier.”  -Tom Stoppard

At home…with dialysis and my family

Written By: Sylvia Amador

It all started when Vanessa Evans was 14 years old. She was getting a regular check up and her doctors found that she was very anemic. They decided to conduct several exams and discovered that she had Chronic Kidney Disease.

“I didn’t realize the impact that it was going to have in my life or how things would change” she says.  Just as she graduated High School, Vanessa received a transplant from her mother, Maya Evans. The transplant only lasted 6 years, so she began dialysis.

Vanessa spent 10 years doing dialysis at a clinic. She would be hooked up to a machine that cleaned her body of toxic fluids, filtering salts, and wastes, 3 days a week for 4 hours. Today, Vanessa is 41, and is one of the 5,500 that do home Hemodialysis. “I wanted to be at home with the baby” Vanessa describes when asked why she decided to try at home dialysis.  “I didn’t want to go to a clinic 3 days a week for so many hours”

Currently, three Hemodialysis machines are used for home hemodialysis in the United States. Vanessa uses one of them: NxStage machine. She does short daily treatments, 5 to 6 days a week for two and a half hours. She was trained, along with her husband, Paul, to use the machine. The training lasted about a month and they mention that it wasn’t very complicated. Vanessa no longer needs to take pills to regulate her blood pressure and says that her health has improved!

For Vanessa, home dialysis has given her time to be a mom, a wife, and a friend. Her husband, Paul mentions that at home dialysis has given Vanessa the chance to have a normal life and to grow with her family. As a final note, Vanessa happily adds “Home dialysis is such a great option. A lot of people don’t know about it, so it’s important to spread the word!”

Vanessa - Home Dialysis

Kidney Walk Leads to Kidney Donation

Thorne Ambulance_Dec 11Charity walks are great at raising funds and awareness for worthy causes, but rarely do they result in life-saving experiences for their participants.

In many ways, Terry Gerics, 62, of Greenville, was a typical Kidney Walk participant – personally affected by kidney disease and eager to support the fight in her community. When she was 43, Gerics was diagnosed with polycystic kidney disease — a condition that causes cysts to form on the kidneys.

“When I was diagnosed, the doctors told me there would be a transplant in my future,” she said. “I thought they had to be wrong because I was such a healthy person.”

Gerics’ kidneys continued to function until she was 61; that’s when her doctors noticedshe was nearing kidney failure. The reality of her condition sank in. It was then that Gerics decided to volunteer and get personally involved with the National Kidney Foundation.

“I heard about the Upstate Kidney Walk last year, and I knew I had to go,” she said. “I usually never take Saturdays off at work, but this was important.”

While volunteering at the Walk, Gerics wore a simple sign that stated, “Kidney needed; any blood type”. The sign caught the eye of Simpsonville resident Sarah Thorne, 27, who runs Thorne Ambulance Service with her husband. Thorne was also volunteering at the walk and Gerics’ sign struck a chord.

“I know quite a lot about kidney disease because so many of our non-emergency transports are for dialysis patients who have kidney failure. So, I know what this disease can do,” she said. “I also knew that donating a kidney could save a life. I believe my faith led me to Terry. My heart was telling me it was the right thing to do.”

The women exchanged numbers and within the month, Thorne was undergoing tests to donate one of her kidneys.

“I had no hesitations about it, and it went very fast. We were very blessed,” Thorne said. “I filled out prequalification paperwork at the end of April and I was in surgery on May 31st.”

The donation saved Gerics’ life and prevented years of dialysis and a potentially long wait on the transplant list. Gerics is not only grateful, but is eager to pay the good deed forward as she and Thorne walk together at this year’s Upstate Kidney Walk being held at in Amphitheater at Furman University in Greenville, SC on April 21. It will be the anniversary of their fateful meeting.

“Sarah is a remarkable person, and I am so appreciative for who she is,” Gerics said. “Now, I’ve made it my mission to find a kidney for someone else. Give me a name, a picture, and their blood type, and I’ll work hard to change their life the way Sarah changed mine. “Thorne Ambulance

Soldier Saves a Life at Home

DallasSoldier Brandon and Bernadette_December 4 2013Dallas, TX – Bernadette Gail Moten was taking a morning trip to the corner store when she happened upon a radio station street team that would help change her life.

The 57-year-old Plano resident had been on dialysis for kidney failure since 2007, and the 106.1 Kiss FM crew asked her, on air, if there was anything she wanted.

“Dialysis was the hardest thing I’ve ever done in my life,” Moten said. “So, I told them that I was on dialysis and needed a kidney.”

It was a long shot, but the call over the radio reached Dallas resident Brandon Vance, who was having a routine commute to work when he heard Bernadette’s message.

“It just sounded like something I needed to do,” Vance, 29, said.

Vance, who did three tours of duty in Iraq with the U.S. Army, was a perfect match for Bernadette. After months of additional testing, the transplant finally went through in late 2011. The experience was life changing not only for Vance, but for Moten who was finally off the painful schedule of dialysis.

“I get to enjoy life now and there is so much I am thankful for,” Moten said. “Brandon gave me life, and now I really take care of myself because I know I have a part of someone else inside of me.”

After initially shying away from telling his story, Vance has decided to become an advocate for organ donation and kidney disease issues. He participated in the Dallas Kidney Walk and shared his story with hundreds of others who have been affected by organ donation and kidney disease in Texas.

“For awhile I kept the donation quiet,” said Vance. “Then I realized this is an important message to get out there. I want more people to look into living donation and organ donation so we can get people who are waiting off that list. To me, it’s the right thing to do.”