itxNews - April PKDnews

Wed, 18 Apr 2012 04:00:00 GMT

It's National Volunteer Appreciation Week!

In honor of the week, we want to thank all our volunteers and fundraisers for making a difference every day. Your dedication and passion toward finding a treatment, a cure and spreading awareness for polycystic kidney disease truly inspires us and reminds us why we love what we do and why we do it.

We appreciate you - and thank you - for all your hard work and support! Please watch our special 'Thank You' video below.

itxNews - PKD Foundation Celebrates National Volunteer Appreciation Week

Mon, 16 Apr 2012 04:00:00 GMT

Today kicks off National Volunteer Appreciation Week. The PKD Foundation is honoring a select group of volunteers who have shown outstanding commitment and passion to finding a treatment and spreading awareness for polycystic kidney disease (PKD). The volunteers and their stories will be featured on the PKD Foundation’s website throughout the week.

The PKD Foundation has more than 60 volunteer-led chapters around the country. The Foundation’s volunteers are the backbone of the PKD community, driving vital programs around the world.

“What stands out most to me about our volunteers is their passion and dedication to our mission to find a treatment and a cure for PKD,” said Gary Godsey, President and CEO of the PKD Foundation. “They inspire us every day.”

The following eleven volunteers will be

itxNews - Denver Chapter Member Andrew Menard has a Whole School Rallying Behind Him

Fri, 13 Apr 2012 04:00:00 GMT

Students, faculty & staff, parents, community members and the local media rallied in support of teacher and PKD patient, Andrew Menard, who is searching for a live donor kidney. This event was the kick-off of Amos Steck Elementary's Kids4Kidneys Campaign to help their beloved teacher.

To learn more about the campaign, go to www.kids4kidneys.com.

To read the article by Fox 31 Denver on the campaign, go here.

itxNews - Brother Donors

Fri, 06 Apr 2012 04:00:00 GMT

In life, family is one of the best gifts given to us. You can count on them when no one else is around and they provide the strongest support when it is most needed. When a family is struck with an illness, it seems as though their bond strengthens - it not only affects the person with it, but the entire unit as a whole. Robin Florin, the youngest of five, grew up knowing firsthand the difficulties one must go through when dealing with disease. Her mother, grandfather and brother were all diagnosed with polycystic kidney disease. Robin and the other 3 siblings escaped having it.

“Since I was 13 my mother was sick with PKD and had home dialysis“Robin said. “It was tough not having a mom who could do a lot of things.”

But even through her struggle Robin said her mom, “…did as much as she could and enjoyed all of her children and grandchildren. We gave her the will to live.”

Both her mother and grandfather have passed away since being diagnosed and although their family faced the turmoil of losing both parents, there was a light of hope when it came to her brother, Dave. He was diagnosed during an ultrasound when he was in his twenties and it was recommended by his doctors that he maintain a healthy lifestyle, incorporating the proper diet and lots of exercise. Thirty years later when he was in his fifties, Dave’s kidney function began to decline and a transplant was needed quickly. When it came to finding a donor, his brother Marty had no hesitation testing for the donation saying, “Dave, when the time comes, make the call.”

Marty ended up being a perfect match for Dave and on September 9^th, 20

itxNews - The Call

Fri, 06 Apr 2012 04:00:00 GMT

Timing is everything when you’re expecting a transplant. At any instance you could get the call and have to drop everything to rush to the hospital. You’re heart is pounding and so many questions are rushing through your head, “How am I going to get there? Who do I need to inform? Is this going to work?” That one call is your future unfolding before you.

Don Prigge was diagnosed with polycystic kidney disease when he was 18 years old during a routine doctor’s appointment. It was 1970, and not many doctors were knowledgeable about PKD. Don was told living past the age of 40 was very unlikely. From that point on, he chose to live life to the fullest.

“I took advantage of every opportunity to live large. I traveled a lot, frequented many rock music venues, visited many parties, skydived and rode motorcycles,” Don said.

In 1998 the disease really started to set in and Don became very sick. At first he denied dialysis because of the negative stories his brothers told him, but one day he experienced unusual pains while at work and decided to go to the hospital. His daughters finally convinced him to try dialysis.

Two and a half years and 18 procedures later, the dialysis was not proving well. It was then, when his doctor told him he would need a 19^th procedure done, that Don told the doctor he was going to try for a kidney.

“I quit dialysis that day and began my fading out process,” said Don.

In June 2011, Don was out to lunch with his girlfriend when he got the call. The University of Wisconsin moved him to the top of the list and they had a kidney that was a perfect match for him- but he had three hours to get there. Sta

itxNews - A Mother's Gift

Wed, 21 Mar 2012 04:00:00 GMT

Less than two months ago, Makenzie Glenn checked into Medical City Dallas Hospital, went into surgery and donated her kidney. Often referred to as a gift of life, donating an organ is arguably one of the most important - and selfless - gifts someone can give. Makenzie gave this gift to her three-year-son, Jace.

Jace was born when Makenzie was just 34 weeks along. He was born with breathing complications, so he was immediately care flighted to Medical City Dallas Hospital. There, he was tested and diagnosed with autosomal recessive polycystic kidney disease (ARPKD) - a very rare genetic disorder, occuring in approximately 1 in 20,000 individuals. ARPKD often causes significant mortality in the first month of life. Within 19 days of being born, Jace had both kidneys removed and went on dialysis. At the time, the doctors and the Glenns were prepared for the worst - but the little boy proved them all wrong.

"He's a miracle five times over, because of all the things he's been through,” Makenzie said.

For the past three years, Jace has been in and out of the hospital. Something Makenzie and her husband Jared have handled very well, despite how tiring and overwhelming it is at times.

They had subsequently adjusted to the idea

itxNews - PKD Foundation Announces New Chief Development Officer

Mon, 19 Mar 2012 04:00:00 GMT

Michelle Davis brings extensive knowledge of the non-profit sector to her new role at the PKD Foundation. Most recently, she served as Executive Director for Nonprofit Connect, a Kansas City-based organization aimed at providing services to nonprofits across the metropolitan region. During her seven-year tenure with the agency, Davis worked aggressively to reposition the agency locally through efforts which included launching a capital campaign and developing the Philanthropy Awards luncheon into one of Kansas City’s largest luncheon events.

Davis began her career in 1997 with the National Kidney Foundation, serving in national fundraising roles, culminating as Affiliate Development Director providing fundraising counsel to 51 local Affiliates throughout the country. During the final year of her four-year tenure with the organization, Davis served as the Affiliate Education Director training local and national staff and volunteers on fundraising and nonprofit man

itxNews - PKD Patient and Advocate Valen Keefer Selected by Donate Life America as one of the 12 Inspiring Women of "20 Million in 2012"

Mon, 05 Mar 2012 05:00:00 GMT

Twelve women whose lives were transformed by organ donation are helping Donate Life America (DLA) inspire 20 million people to sign up to be organ and tissue donors this year.

“A key goal of this campaign is to reach out to young women who didn’t check yes at the DMV when they got their licenses at 16; to ask them to be role models for their friends by signing up today to save lives at DonateLifeAmerica.org,” said Tenaya Wallace, national campaign director of “20 Million in 2012.”

To reach this active and socially connected audience, DLA is highlighting the need for donors through National Donate Life Blue and Green Day on April 20th,when celebrities, stylists, teens, fashionistas, talk show hosts, politicians, and others will be asked to wear blue and green. This is a new element of April’s National Donate Life Month, which brings attention to organ, eye and tissue donation annually.

“The Donate Life colors of sky blue and lime green are stunning together and every spring you see fashions and accessories, even make-up, in these colors,” says Valen Keefer (29, Sacramento), who will celebrate the 10-year anniversary of her kidney transplant in August. Valen is a spokesperson for University Kidney Research Organization (UKRO), along with Natalie Cole and Deana Carter, and one of the 12 Inspiring Women of 2012. “During National Donate Life Month, I will be presenting Joan deRyk Jones, the Mayor of Truckee whose DMV office has the highest donor registration rates in California, with a Donate Life scarf and Sacramento Mayor Kevin Johnson with a Donate Life tie so that these mayors can show off their blue and green on April 20th!”

Get the full story here: http://bit.ly/yGJk3p

itxNews - The Tolvaptan TEMPO 3/4 Clinical Trial is Officially Completed

Thu, 01 Mar 2012 05:00:00 GMT

The last patients have completed the TEMPO 3/4 Study, which was first listed on the FDA Clinical Trials website in January 2007. The data collected from all the study patients will now be reviewed and evaluated by the study directors. When the data review is complete, the pharmaceutical company Otsuka will use this information to decide on the next steps in moving tolvaptan through the drug approval process.

itxNews - February PKDnews

Wed, 15 Feb 2012 05:00:00 GMT

Update on Genetic Information Non-Discrimination Act (GINA)
Last month, final regulations were made to the Genetic Information Non-Discrimination Act (GINA), which prevents genetic-based discrimination in health insurance and employment. View the updated document with some of the most frequently asked questions here.

A Perfect Match
Maggie and Mike Sessler were a perfect
match for each other, in more ways than one. Last April, Maggie gave her husband a second chance at

Some people spend a lifetime trying to find their perfect match. Maggie and Mike were a perfect match in more ways than one.

When Maggie married Mike Sessler in 2006, she had never heard of polycystic kidney disease (PKD). Mike was diagnosed with PKD in 1998 at the age of 25. Twelve years later, during a routine doctor’s appointment, Mike learned his kidney function was declining. However, the doctors were hopeful that he would not need a kidney transplant for a few years.

Just months later, Mike’s kidneys were failing quicker than anyone expected. Unfortunately, most of Mike’s family members and friends who were tested, failed as a match. Yet, there was still hope. Maggie wanted to be tested – and she passed with flying colors.

On April 11, 2011, Maggie donated a kidney to her husband. The doctors were in disbelief of how well of a match the two were for each other.

“Personally, I had a feeling deep down that I was a perfect match for him,” Maggie said. “God has a plan for everyone and ours was for me to give my husband the gift of life.”

Both Mike’s father and grandmother passed away from PKD-related complications. His 13-year-old daughter Kayla, was also born with PKD.

“PKD will always be a topic that will be talked about in our family,” Maggie said. “I think it has made us stronger and closer both as a couple and as a family. Mike and I share a unique bond as husband and wife that not many couples would understand.”

an updated document with some of the most frequently asked questions.

Download and print this document for reference, if you'd like!

itxNews - PKD Research Webinar Now Available Online

Thu, 02 Feb 2012 05:00:00 GMT

On January 24th, Dr. Benjmain Cowley, Jr. hosted the webinar "2012 PKD Research Update." He shared the latest on what is happening in the field of PKD research.

If you would like to view the archived version of the webinar, please click here.

If you would like to view our entire library of archived webinars, please click here.

itxNews - The NIH Offers New Online Resource to Help Increase Awareness of Kidney Disease

Fri, 27 Jan 2012 05:00:00 GMT

The National Institutes of Health (NIH) has released a new series of free tools and resources through its National Kidney Disease Education Program (NKDEP) to help community groups increase awareness of kidney disease. The educational materials can be found online in a new section of the NKDEP website called, Get Involved.

The tools are designed to be easily accessible and time-saving for everyone. The section offers the following resources that can be used by physicians, healthcare organizations, community health centers and other groups interested in kidney disease, such as families:

- Fact sheets on kidney disease and NKDEP

- Kidney disease illustrations

- Newsletter articles for patients and providers

- Social Media content

NKDEP is an initiative of the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), one of the National Institutes of Health. NKDEP aims to raise awareness of the seriousness of kidney disease, the importance of testing those at high risk and the availability of treatment to prevent or slow kidney failure. For more information about NKDEP, visit www.nkdep.nih.gov.

Learn more about Get Inv

itxNews - Dr. Theodore Steinman Named Recipient of the 2012 Medal of Excellence Award

Tue, 17 Jan 2012 05:00:00 GMT

The American Association of Kidney Patients (AAKP) has named Dr. Theodore Steinman as one of the recipients of the 2012 Medal of Excellence Award. The award recognizes a renal physician(s) for their extraordinary skills and devotion in the field of nephrology.

Dr. Steinman served on the PKD Foundation Board of Trustees and was a past Chair of the Foundation's Scientific Advisory Committee.

The other recipient of the award is Dr. Charles McAllister.

AAKP will honor Dr. Steinman and Dr. McAllister at the Medal of Excellence Award Dinner held Friday, March 16, 2012 at the Marriott Wardman Park Hotel in Washington D.C.

To read more about the award and its recipients, please click here.

itxNews - United Network for Organ Sharing (UNOS) Kidney Transplant Committee Update

Tue, 03 Jan 2012 05:00:00 GMT

Concepts Proposed to change current policy

• Utilize a kidney donor profile index (KDPI) to better characterize donor kidneys and to provide additional clinical information for patients and providers to consider during the transplant evaluation process and organ offer process.

• Allocate the majority of organs (80%) by age matching so that candidates within 15 years (older and younger) of the donor are prioritized.

• Allocate some kidneys (20%) by a kidney donor profile index (KPDI) and estimated recipient post-transplant survival.

Feedback received from public comments

• General agreement with longevity matching for some kidneys

• Concerns over use of age matching (+/-15 years)

• Support for use of KDPI as a clinical tool and in allocation

Based on public feedback, the Kidney Transplant Committee deciding that age matching would be dropped.

Highlights of current working model

• Allocation based on longevity of graft matching to expected recipient longevity is accepted and sustains legal scrutiny.

• The majority of kidneys are still allocated very similarly to current rules.

• Waiting time remains the primary determinant of kidney allocation

•

We wish you and your family the very best this holiday season! And as the end of the year approaches, we also want to thank you for your continued support. We have made great strides this year and will continue doing so in 2012. We are moving forward with "Accerelating Treatments to Patients" in an effort to develop treatments for PKD.

But this isn't possible without people like you! Help us end the year on a high note by making a gift today. You'll be supporting PKD research and making a difference in the lives of 12.5 million people.

New Guideline May Deprive Recipients of Lifesaving Organs
The Public Health Service (PHS) has initiated a new guideline to discard any transplanted organ at risk of blood borne infectio

itxNews - 2012 Summer Student Research Program (SSRP) in Polycystic Kidney Disease at Mayo Clinic

Thu, 22 Dec 2011 05:00:00 GMT

The objective of this SSRP is to expose future PhD and clinician scientists to investigate careers in Nephrology, particularly in areas of research germane to PKD. The MTPC has established a program to allow up to six students to study in a PKD laboratory or be mentored in PKD-related clinical research at Mayo Clinic. Applicants should be undergraduates that will be seniors or juniors after next summer and are undertaking a science based major.

The program will allow students to be involved in hands-on research associated with PKD and after completing the program will present a poster describing their work at the Mayo Summer Student Research Symposium.

There are up to six positions available, with each appointee being awarded $5,000 as a stipend. The appointments are for ten weeks, May 29—August 3, 2012

Apply through the Mayo Summer Undergraduate Research Fellowship (SURF) Program. www.mayo.edu/mgs/surf.html. Online application is under Admissions. Deadline is February 1, 2012

When filling out your SURF application it is important to designate Biochemistry and Molecular Biology (BMB) or Biomedical Engineering (BME) as your first choice of track and the first words of your personal statement should be “2012 SUMMER STUDENT FOR POLYCYSTIC KIDNEY DISEASE RESEARCH PROGRAM.”

For questions contact: Mary Bennett, bennett.mary@mayo.edu

itxNews - Proposed Organ Donor-Derived Infection Guideline May Deprive Potential Recipients of Lifesaving Organs

Wed, 21 Dec 2011 05:00:00 GMT

The Public Health Service (PHS) has initiated an update of guideline designed to reduce the risk of transmission of blood borne infections during organ transplants. Experts from the transplant community initially participated in the development of the new guideline. However, the guideline now proposed by PHS deviate markedly from the input initially provided by the transplant experts. The main concern is that the guideline, which has an admirable goal of limiting the risk of transmission of infectious agents with transplanted organs, does not take into consideration the increased morbidity and mortality associated with needing an organ transplant. This could result in organs being discarded unnecessarily. Patients in need of organ transplants may be better served to accept an organ with a very small risk of infection transmission rather than wait for a perfect organ and perhaps die while awaiting that perfect organ.

The PKD Foundation shares the concerns of the transplant community, and is also concerned that PHS seems to have dismissed the input from the experts from the transplant community. The proposed guideline and a letter written to the Assistant Secretary of Health by the leadership of the American Society of Transplantation, the American Society of Transplant Surgeons, the Association of Organ Procurement Organizations, and the Organization for Transplant Professionals can be accessed here.

Benjamin D. Cowley, Jr., M.D.

Chair, Scientific Advisory Committee

Polycystic Kidney Disease Foundation

The PKD Foundation welcomes former Utah Senator Robert Bennett and ARPKD expert Dr. Lisa Guay-Woodford as the newest members of the Board of Trustees.

Senator Robert Bennett

Robert Bennett served as a United States Senator from Utah for 18 years working on the Banking Committee, Energy & Natural Resources Committee and Appropriations Committee. He is the Founder and Chairman of the Bennett Consulting Group, which guides individuals and corporations in business and public policy settings. He is the Chairman of the TechAmerica Foundation and a Senior Fellow at the Bipartisan Policy Center. Mr. Bennett is currently on the Board of Trustees at the German Marshall Fund and Honorary US President of the Transatlantic Policy N

itxNews - President and CEO Featured in New Five-Part Educational Series

Tue, 20 Dec 2011 05:00:00 GMT

Gary G. Godsey, the new President and CEO of the PKD Foundation, is featured in a special nonprofit educational video series, Expert Guidance on Nonprofit Management.

Godsey's extensive knowledge of nonprofit management and 32-year career in the nonprofit sector caught the attention of Community TechKnowledge, a nonprofit software solutions company that provides free training to nonprofit executives. It collaborated with Godsey to produce the special five-part series called Transforming Your Nonprofit for the 21st Century: Interview with Gary G. Godsey.

The series topics include: Remaining Relevant, Collaborative and Competitive in the 21st Century; Leadership's Role in Nonprofit Transformation; How to Ensure that Volunteers are an Asset; Fundraising in the 21st Century; and, Recruiting and Retaining Donors, Today and Tomorrow.

For the past 10 years, Godsey served as President and CEO of United Way of Metropolitan Dallas. He is also a contributing columnist for Smart Bu

itxNews - American Society of Nephrology Holds Annual Meeting

Fri, 16 Dec 2011 05:00:00 GMT

The American Society of Nephrology held its annual meeting November 8-13, 2011 in Philadelphia, PA. This annual meeting of physicians, researchers, students, fellows and other medical personnel is the largest gathering of kidney professionals in the world. More than 13,000 physicians and other medical professionals came to exchange knowledge and learn of the latest scientific and medical advances. There was a learning pathway for renal cystic diseases, which included posters sessions, symposia, oral presentations and special sessions given each day.

Because of the success of last year’s course, the PKD Foundation was again asked to sponsor a post-graduate education course on Autosomal Dominant Polycystic Kidney Disease. This year the title was Polycystic Kidney Disease: Translating Mechanisms into Therapy. This was a wonderful opportunity to educate the medical community about polycystic kidney disease: Mechanisms of cyst development, diagnosis, genetics, disease management, complications, clinical trials and emerging therapies. The course was fully enrolled again this year with over 150 attendees.

The course co-chairs were Ben Cowley, MD, SAC Chair, and John Bissler, MD, SAC member.

itxNews - The PKD Foundation Supports the NIH FY 2012 Spending Bill

Thu, 08 Dec 2011 05:00:00 GMT

The PKD Foundation supports the spending bill for Fiscal Year 2012 that provides the National Institutes of Health (NIH) with a funding increase to support its critical work. NIH biomedical research is vital to millions of Americans awaiting
improved health through medical breakthroughs. Ninety percent of past PKD research has been funded by NIH.

Biomedical research is a proven driver of innovation, which is a primary creator of jobs. NIH funding
supports more than 350,000 research positions at universities and research institutions across the
country. Another 6,000 scientists work in NIH’s own laboratories.

A continued commitment to NIH is more essential than ever, not only to address the country’s growing
health concerns but also to spur medical innovation for the next generation of life-saving diagnostics,
treatments, and prevention strategies. Without it, people living with devastating diseases will continue to
wait and suffer.

itxNews - Relaxin Improves Poor Blood Flow and Kidney Function in a Rat Model of PKD

Wed, 07 Dec 2011 05:00:00 GMT

After a four-week course of the vasodilator hormone relaxin, kidney function and blood flow immediately improved in lab rats genetically altered to model polycystic kidney disease, according to research presented on Dec. 6 at the American Society for Cell Biology Annual Meeting in Denver.

Relaxin lowered the collagen scores of the PKD rats, indicating that the drug had slowed scar formation or helped dissolve the old fibroid tissue that characterizes the kidneys of animals and humans with the disease, according to Heather Ward, Ph.D., and Angela Wandinger-Ness, Ph.D., of the Unversity of New Mexico and collaborators.

The researchers also noted that in rats, relaxin reduced the size of the large fluid-filled cysts that gradually encroach on kidney function in human PKD patients.

Read the full article here.

Dr. Wandinger-Ness currently serves on the PKD Foundation’s Scientific Advisory Committee.

itxNews - MODDERN Cures Solution Act Recently Introduced

Mon, 28 Nov 2011 05:00:00 GMT

Currently, no disease modifying therapies exists to treat PKD. PKD research is at a critical stage with more than twenty clinical trials underway. There is hope for PKD patients and families. However, to get potential treatments to patients faster, our drug and diagnostic regulatory systems must be improved.

The PKD Foundation supports the MODDERN Cures Solution because it will improve the regulatory system to encourage scientific inquiry, reward ingenuity, and safely speed modern miracles into treatments and diagnostics that improve patient outcomes. It will help remove barriers to innovation and invention and provide greater predictability in the search for answers to our nation’s unmet medical needs.

Specifically, the MODDERN Cures Solution will:
• Create a new class of drugs that will include compounds or those drugs ignored or set aside in the lab. Many of these compounds or drugs could hold the promise to treat conditions with few or no medical options. This class of drugs would be known as “dormant therapies.”
• Encourage drug companies to study these promising treatments.
• Make it easier to predict if a diagnostic test will be approved before investing in its development.
• Ensure that Medicare will reimburse for these treatments and tests helping to ensure that patients will benefit from their development.

itxNews - Professor Carsten Bergmann is the 2011 Recipient of PKD Germany's PKD Award

Tue, 22 Nov 2011 05:00:00 GMT

This year's PKD Award was given to Prof. Bergmann for his work, Mutations in multiple PKD genes may explain early and severe polycystic kidney disease.

Prof. Carsten Bergmann studied under Prof. Zerres at University Aaachen. The prize was awarded during the PKD Patient Conference in Frankfurt, Germany on Sept. 17 by PKD Germany.

Professor Bergmann found PKD may be mimicked by dominant HNF1ß mutations. Extensive phenotypic variability among affected family members reflects that the mechanisms underlying different disease expression are still unknown. The high recurrence risk in pedigrees with early and severe PKD strongly suggests a common familial modifying background. Professor Bergmann's findings are in line with a common pathogenesis and dosage theory for PKD and may propose a general concept for the modification of disease expression in other so-called monogenic disorders.

itxNews - November E-News

Wed, 16 Nov 2011 05:00:00 GMT

Welcome New President and CEO Gary Godsey

The PKD Foundation is pleased to announce Gary Godsey as the new President and Chief Executive Officer effective Nov. 28.

“I am very honored to have been selected for this position.” Godsey said in response to being named to the role.

“The PKD Foundation is focused on finding a cure for a disease impacting millions of people worldwide. I look forward to working hand-in-hand with the volunteers, board members and staff, who are so committed to addressing the current needs of patients and their families, while being laser-focused on finding a treatment and cure for PKD. This is a unique and exciting opportunity, one which I am grateful to be part of."

More information about Mr. Godsey’s background is available here.

Honoring Our Heroes
We've been working on a way behind the scenes to honor our heroes – our top volunteers and fundraisers who are making a difference in the fight against PKD. Take a minute and visit the new Heroes page today. They’re an inspiration to us all!

How to Handle Grief During the Holidays
Losing a loved one is difficult, especially during the holidays. Howard R. Winokuer, PhD, has prepared an article offering tips to coping with grief this holiday season.

Holiday Eating
How will you get through this holiday season, while sticking to your d

itxNews - Coping with Grief During the Holidays

Wed, 16 Nov 2011 05:00:00 GMT

Thanksgiving, Hanukkah, Christmas, and New Years can be one of the most difficult periods of time for individuals and families living with PKD or for families who have had a loved one die as a result of PKD. The holiday season brings back memories of families when everyone was healthy, and the experience of living with PKD, or the death of our loved one, causes us to be directly confronted with the fact that our family, as we have known it, is struggling with an illness or a loss that most people don’t understand. As a result of living with PKD or having a family having die from PKD, the holidays can be a painful reminder of holidays past when everyone was healthy. The following are some suggestions that may be helpful.

You are the best judge of what you need. Decide on a plan for yourself, but don’t be afraid to change your mind. You may feel a wide range of emotions, and you need to allow yourself time to experience these emotions in order for you to heal. For example, you may have made a commitment to go to a party and you find yourself struggling with the idea. It is okay to change your mind. Your friends may be disappointed, but they will understand.

Take time to anticipate the holidays and how you want to spend them. Some people find comfort in continuing the lifetime traditions they have created; others find it helpful to create new traditions. For example, you may have always had the family over for a holiday meal and this year the task seems overwhelming. It is okay to either go out to someone else’s home or even make reservations at a restaurant. Or you may have always opened gifts on Christmas morning and this year you would like to open them up on Christmas Eve. It could be helpful to speak with other family members and discuss what will work for you. This is a family affair and it’s very helpful to get family input.

Give yourself per

itxNews - Founder of PKD Foundation, Dr. Jared Grantham, Receives John P. Peters Award

Fri, 11 Nov 2011 05:00:00 GMT

Founder and Board Of Director Emeritus of the PKD Foundation, Dr. Jared Grantham, will accept the John P. Peters Award this week in Philadelphia from the American Society of Nephrology. To view the complete story, click here.

itxNews - Taking Care of Ourselves: Self-care for the Provider

Wed, 09 Nov 2011 05:00:00 GMT

By Howard R. Winokuer, PhD

Isolation, frustration, irritability, boredom, depression, anxiety and outbursts of anger are all signs of stress associated with caring for someone with a long-term or chronic illness, says Dr. Charles Figley, one of the country’s leading experts in stress. Often times, these signs of stress can be debilitating to the caregiver and preclude our ability to care for our loved ones as we would like. For those of you caring for someone with PKD, you know exactly what I mean.

As a caregiver, you may have experienced extremely high levels of stress, with emotional and physical symptoms, including sleep disturbance, loss of energy and feeling tired, reduced resistance to infection, problems concentrating, headaches, backaches, muscle aches and gastrointestinal complaints. All of these symptoms are normal but avoidable.

Caring for oneself while caring for others is critical; not only to help us take care of our loved ones, but also to help us be able to take care of ourselves. The following tips, suggested by Dr. Alan Wolfelt, are not meant to be all inclusive. Pick the ones that you believe will help you in your efforts to stay physically and emotionally healthy.

• RECOGNIZE that when you are caring for a loved one, there is a high risk for burnout. While helping your family member has its rewards, it also has its dangers. Keeping yourself aware that you are “at risk” for burnout will help keep you from denying the existence of stress related signs and symptoms.

• CREATE periods of rest and renewal. The quickest way to burnout is spreading yourself too thin. Learn to respect your mind’s and body’s need for periods of rest after a long day.

• BE COMPASSIONATE with yourself about not being perfect. After all, none of us are!

itxNews - Caregiver Stress and PKD

Wed, 09 Nov 2011 05:00:00 GMT

What is stress?
For most of us, becoming a caregiver to a person with kidney disease can be a stressful change. It is easy to feel overwhelmed and unable to cope. While it may not be possible to avoid the stressful situation of being a caregiver to someone with renal disease, we can learn to cope with stress in a healthy way. All of us can learn to control the way we react to stress and change how stress affects us.

Warning signs of stress
It is important to recognize the physical, emotional and behavioral signs that our bodies send when we are in stressful situations, such as caring for someone with end stage renal disease. If we recognize these signals early, we can take the action needed to minimize the harmful effects of prolonged stress.

Physical signals
• Inability to sleep or sleeping too much
• Weight gain or loss
• Feeling tired all the time
• Change in posture – walking with your head down or with a stooped posture
• Chronic headaches, neck pain or back pain

Emotional signals
• Anger
• Frequent crying spells
• Inability to think clearly or concentrate
• Excessive mood swings
• Feelings of sadness that don’t go away

Behavioral signals
• Withdrawing from usual activities and relationships
• Quitting or changing jobs frequently
• Becoming more impulsive and over-reacting to things
• Using alcohol or drugs to feel better

Coping skills and techniques to deal with stress
If you find yourself feeling some of the signals listed above, read on. Many, or possibly all, caregivers, family members and friends who are closest to a person with a chronic health condition may show some s

itxNews - No Scientific Evidence to Indicate Micro-Chinese Medicine Osmotherapy and Stem Cells Transplant are Effective Treatments for PKD

Tue, 08 Nov 2011 05:00:00 GMT

PKD patients around the world are being aggressively recruited by Shijiazhuang Kidney Disease Hospital, China, to undergo a treatment they call ‘Micro-Chinese Medicine Osmotherapy + Stem Cells Transplant’ for polycystic kidney disease. The PKD Foundation has asked Dr. Ben Cowley, Chair of our Scientific Advisory Committee, and Dr. Terry Watnick, Vice-chair, to review and comment on these claims.

They report there is currently no scientific evidence indicating these treatments or techniques are effective treatments for PKD. Dr. Gerd Walz, from the University of Freiberg in Germany, a nephrologist and PKD researcher, confirms the evaluation of Drs. Cowley & Watnick and is concerned that this therapy may result in even more damage to the kidneys and may prevent patients from having a transplant later.

As always, we strongly suggest any changes in your medical treatment, medications, diet or lifestyle be discussed with your doctor or healthcare team first. This is extremely important when considering undocumented and experimental treatments for PKD.

itxNews - Scientists Make Strides Toward Drug Therapy for ADPKD

Mon, 07 Nov 2011 05:00:00 GMT

Scientists at University of California, Santa Barbara, have discovered that ADPKD patients may benefit from a drug that is currently being used to treat arthritis. This work was done in the laboratory of Dr. Thomas Weimbs, Associate Professor in the Department of Molecular, Cellular and Developmental Biology and in the Neuroscience Research Institute at UCSB. Weimbs and his team found Leflunomide, a drug clinically approved to treat arthritis, was very effective in reducing cyst growth in a mouse model of ADPKD.

Weimbs had earlier reported that one of the differences between normal and cystic kidney cells involved the STAT6 signaling pathway in renal cells. This pathway is continuously activated in cyst cells, which leads to excessive cell proliferation and cyst enlargement.   Leflunomide had previously been shown to inhibit this pathway.

“These results suggest that the STAT6 pathway is a promising drug target for future therapy for ADPKD,” said Weimbs. “This possibility is particularly exciting because drugs that inhibit the STAT6 pathway already exist or are in active development.”

itxNews - Dr. Jared Grantham Wins John P. Peters Award

Wed, 02 Nov 2011 04:00:00 GMT

Jared J. Grantham, MD, FACP, is this year's recipient of the John P. Peters Award, to be presented on Saturday, November 12.

The award recognizes Dr. Grantham's outstanding contributions to improving the lives of patients with kidney disease and to furthering the understanding of the kidney in health and disease.

His life work in nephrology falls into two major categories: defining the cellular mechanisms of salt and fluid transport across renal epithelial membranes and exploring the pathogenesis and treatment of polycystic kidney disease.

Learn more about the prestigious John P. Peters Award at: http://www.asn-online.org/awards/peters.aspx.

itxNews - PKD Foundation Announces New President and CEO

Tue, 01 Nov 2011 04:00:00 GMT

For Further Information:

Dave Switzer, Director of Marketing and Communications
daves@pkdcure.org
(816) 268-8481

PKD FOUNDATION ANNOUNCES NEW PRESIDENT AND CEO

Kansas City, MO – Nov. 1 - The PKD Foundation is pleased to announce Gary Godsey as the new President and Chief Executive Officer, effective Nov. 28, 2011.

Godsey brings extensive knowledge of non-profit management to his new role at the PKD Foundation. He served as President and Chief Executive Officer of United Way of Metropolitan Dallas from 2000 to 2011, after a successful career as President of United Way/Capital Area in Austin, Texas. Godsey began his 32-year career in the nonprofit sector when he was hired as Executive Director of the American Cancer Society upon graduation from college. More information about Mr. Godsey’s background is available on the PKD Foundation website at http://www.pkdcure.org/tabid/722/Default.a

itxNews - ARPKD Study: Mutations in PKHD1 Gene

Thu, 27 Oct 2011 04:00:00 GMT

A team of researchers, led by Jason Bakeberg and Christopher Ward of Mayo Clinic in Rochester, MN, studied how mutations in the PKHD1 gene lead to Autosomal Recessive Polycystic Kidney Disease (ARPKD), which affects 1 in 20,000 newborns. They developed a method of inserting a small tag into the PKHD1 gene in mice and then followed the production, modification, secretion and localization of the gene’s product, the protein fibrocystin.

This method facilitates the study of how the protein is handled by renal cells and will better enable researchers to understand how defects in the PKHD1 gene result in ARPKD.

Epitope-tagged Pkhd1 tracks the processing, secretion, and localization of fibrocystin.
JL Bakeberg, R Tammachote, JR Woollard, MC Hogan, M Li, JM van Deursen; Y Wu, BQ Huang, VE Torres, PC Harris and CJ WardJournal of the American Society of Nephrology, 2011 Oct 21 (epub ahead of print)

itxNews - PKD Outcomes Consortium Leaders, FDA Scientists to Meet at Voluntary eXploratory Data Submission (VXDS) Meeting

Thu, 20 Oct 2011 04:00:00 GMT

Key leaders from the PKD Outcomes Consortium will hold a Voluntary eXploratory Data Submission (VXDS) meeting with the FDA scientists on November 18th.

In preparation for this meeting, Critical Path Institute (C-Path) submitted an 88 page scientific proposal to the FDA that describes the critical need for new endpoints in PKD clinical trials.The intention of the PKD Outcomes Consortium is to submit a request that the FDA qualify Total Kidney Volume (TKV) as a biomarker for use in testing the effectiveness of new drugs. The research proposal also details the datasets that would be provided and the methodology that will be used to apply modeling and simulation to support this qualification.

The meeting is an important next step to share scientific information with the FDA and provide a forum for the FDA to provide feedback and advice to the Consortium. The Consortium believes the qualification of TKV by FDA will enhance the understanding of the significant unmet needs faced by patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) and facilitate the development of drugs for the treatment of PKD.

itxNews - PKD Foundation October 2011 E-Newsletter

Wed, 19 Oct 2011 04:00:00 GMT

Join in the Fight Against PKD!

Join in the fight like Melissa Waibel, who's been fighting ever since she lost her son to ARPKD. On June 29, 2010, Melissa gave birth to her second son, Colton Ray Waibel. Shortly after birth, Colton was diagnosed with ARPKD – and six days later, he passed away.

“My husband and I thought we were going to be spoiling another son, instead our efforts turned towards advocating for the PKD Foundation. At that time we, along with many others, vowed to raise awareness and funds to find a cure and keep his memory alive. His short time spent here impacted many lives.”

Melissa and her family are devoted to spreading awareness and fundraising, in hopes of one day finding a cure for the 12.5 million people worldwide affected by PKD. There are only a few weeks left in the 2011 Walk for PKD, but you can still make a difference like Melissa and help millions of others impacted by this disease. Help us find a cure by continuing to fundraise for the 2011 Walk for PKD today!

Tolvaptan in ADPKD - Three Years' Experience

A report describing the use of tolvaptan in 51 ADPKD patients was published in the October issue of the Clinical Journal of the American Society of Nephrology. In the new pilot study, the drug (tolvaptan) was administered to 51 subjects in the United States and Japan for 3 years. The preliminary results suggest that cyst growth progressed more slowly in the patients treated with tolvaptan. here.

itxNews - Tolvaptan in Autosomal Dominant Polycystic Kidney Disease: Three Years’ Experience

Tue, 11 Oct 2011 04:00:00 GMT

A report describing the use of tolvaptan in 51 patients with ADPKD was published in the October issue of the Clinical Journal of the American Society of Nephrology. In this new pilot study – meaning it was not the ‘gold-standard’ type of double blind, sugar pill controlled study – the drug (tolvaptan) was administered to 51 subjects in the United States and Japan for 3 years.

The total kidney volume in these patients increased at a rate of 1.7% per year and their kidney function or glomerular filtration rate declined at a rate of 0.7 ml/year. Since there was no placebo group in this study, the subjects treated with tolvaptan were compared to ADPKD patients from older studies (CRISP and MDRD) that were matched for age and gender. The renal size in these historical controls, increased by 5.8% per year, which was more than 3X the rate in the tolvaptan treated group. The glomerular filtration rate decreased by about 2.1 ml/year in the historical control group, 3 times faster than in the tolvaptan treated group.

Taken together, these results suggest that cyst growth progressed more slowly in the patients treated with tolvaptan at least when compared with the historical controls. Although these results are a cause for optimism, they are preliminary. This study included a small number of subjects and did not include a concurrent control group of patients treated with placebo. Therefore we anxiously await the results of the ongoing worldwide double blind placebo controlled clinical trial that is slated to end in early 2012.

itxNews - ARPKD Webinar Now Available Online

Fri, 07 Oct 2011 04:00:00 GMT

On October 4, ARPKD advocate and mother Julia Roberts hosted the webinar "Day to Day Living with ARPKD." She discussed some key things parents should be aware of when raising an ARPKD child.

If you would like to view the archived version of the webinar, please click here.

If you would like to view our entire library of archived webinars, please click here.

itxNews - New PKD Health Notes Blog

Thu, 22 Sep 2011 04:00:00 GMT

This new blog provides information on nutrition, recipes, and tips for a healthy lifestyle to those with PKD and other kidney related issues. Readers also have the opportunity to post any questions they might have about PKD and nutrition. For more information, please visit pkdheatlhnotes.org.

itxNews - PKD Foundation September 2011 E-Newsletter

Wed, 21 Sep 2011 04:00:00 GMT

Walk Season is in Full Swing! You Still Have Time to Register and Fundraise!

With 17 Walks under our belt, Walk season is moving right along! But don’t think you’ve missed out on your chance to participate. Even if your Walk is over, you can still make a difference through fundraising! And if your Walk hasn’t happened yet, don’t miss your chance to register! Let’s see what you can do!

Day to Day Living with ARPKD Webinar – Save Your Spot Today!

When a child is diagnosed with ARPKD (Autosomal Recessive Polycystic Kidney Disease) or other cystic kidney diseases, it can seem overwhelming for parents. In this webinar on October 4th at 7 pm Central, ARPKD advocate and mother Julia Roberts will guide you through some key things you need to be thinking about when raising an ARPKD child. Register to attend today!

New! PKD Health Notes Blog by Kelly Welsh

Renal Dietician Kelly Welsh has partnered with the PKD Foundation to bring you a new blog dedicated to information on nutrition and wellbeing. Kelly will share recip

itxNews - Racing – and Fundraising – His Way to the Finish Line for PKD

Fri, 09 Sep 2011 04:00:00 GMT

When Scott Bragan makes a promise, he intends to keep it.

So when the Tampa father of two told his wife he’d give her a kidney, he meant it and very soon will begin testing to become a donor.

And when he vowed to raise money for PKD education, advocacy, and research, he jumped right in with both feet. His first fundraising event for the PKD Foundation was on the inaugural 2008 Run for PKD team in the Bank of America Chicago Marathon. Then after much excitement and momentum for PKD, he created Team Tampa PKD and led a nine-member team in the 2009 race, raising over $25,000 during some of the toughest economic conditions we have seen.

Now Scott has planned two more races in the near future (the Bank of America Chicago Marathon in October and the Disney World Half-Marathon in January) and leading 22 runners in a sprint to raise $52,000 for the PKD Foundation.

“As our lives have taken a turn in a very different direction, it has become a personal fight, almost like a ministry or a calling for me, and this is now much bigger than just one family,” the 43-year-old Team Tampa PKD Captain says.

Scott’s wife Erika and her mother both have PKD. Having just turned 40, Erika’s kidneys are operating at about 25 percent, and she’s struggling with the very real symptoms of increased blood pressure, nausea, and eating issues. Scott and Erika’s children, Madison, 10, and

itxNews - Scientists explore new model in battle against kidney disease

Thu, 08 Sep 2011 04:00:00 GMT

A multi-organizational effort to combat polycystic kidney disease has turned to the scientists at software and consulting firm Pharsight to develop quantitative models of the disorder. It's another step in the Critical Path Institute's PKD Consortium quest to advance CDISC research data standards and an imaging biomarker for the kidney disease, which affects one in 500 Americans and more than 12 million people worldwide. CONTINUE

itxNews - Mayo Clinic and Summa Health System Collaborate on Study Treating Polycystic Liver and Kidney Disease

Fri, 02 Sep 2011 04:00:00 GMT

Mayo Clinic and Summa Health System are collaborating on a study on treating polycystic liver and kidney disease.

The research will focus on Apatone, a drug from San Diego-based IC-MedTech that’s also being investigated for treating cancer and joint inflammation.

Get the full article at: http://bit.ly/q1QkRm

itxNews - Major American Kidney Organizations Appeal for Help from HHS Secretary Sebelius

Wed, 31 Aug 2011 04:00:00 GMT

Leaders of major U.S. kidney organizations concerned with reducing the burden of chronic kidney disease (CKD) in America, joined forces with their colleagues at the International Society of Nephrology (ISN) in its joint global initiative asking Health Ministers around the world, including HHS Secretary Kathleen Sebelius – to help secure the inclusion of kidney disease in the strategies coming from the World Health Organization/United Nations High Level Meeting on Non-Communicable Diseases being held in New York, 19-20 September 2011. The decision by the UN General Assembly to convene this meeting provides a unique opportunity for the international community to act against the non-communicable disease epidemic and save millions of lives.

Non-Communicable Diseases like CKD, diabetes, cancer, and heart disease (and others) have replaced infectious diseases (like HIV/AIDS, malaria, influenza, etc) as the most common and costly cause of global suffering and death. Therefore, in 2005 WHO challenged doctors around the world to "reduce death rates from non-communicable diseases by 2% per year during the next 10 years." Strangely however, only diabetes, heart disease, cancer, and pulmonary disease are included in WHO's non-communicable disease strategies; conspicuously absent is CKD, even though it affects twice the estimated number of the world's population with diabetes – including 5-7% of the U.S. population suffering from moderate to severe CKD.

Dr. Steinman is a Clinical Professor of Medicine at Beth Israel Deaconess Medical Center and Harvard Medical School as well as a current member of the PKD Foundation Board of Trustees and a past Chair of the PKD Foundation’s Scientific Advisory Committee. Click here for a PDF document you can print and take with you to the doctor or read below ...

When interacting with your nephrologist, it's important the physician discusses issues you and family members face with ADPKD. (ARPKD issues will not be addressed in this article.) Your nephrologist needs to listen to you and address your concerns. The issues below are not necessarily in order of importance, but reflect an overall approach to the understanding and treatment of PKD.

1. Genetics of PKD (Incidence is 1:500 – 1000 live births)
• Inherited: Each offspring of an affected parent has a 50% chance of inheriting the disease.
• Spontaneous mutation: It is estimated that the incident of spontaneous mutation is 4-7% of the PKD population, but an exact number is difficult to estimate. The only way one can truly be classified as a spontaneous mutations is if both natural parents have negative ultrasounds for kidney cyst formation.

2. How do I tell if I have PKD I or PKD II ?
It is estim

itxNews - Support the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 1454)

Fri, 12 Aug 2011 04:00:00 GMT

On behalf of patients and their families suffering from polycystic kidney disease (PKD), the PKD Foundation asks for your support of The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 1454). This bill would end the 36-month limit for anti-rejection medications post kidney transplantation.

You can help! Write a letter or schedule a visit with your local congressman! The PKD Foundation has a lot of great information available here to help you do that.

Learn more about this bill by downloading the pdf here.

itxNews - Belatacept: Another drug to prevent acute rejection in kidney transplant patients

Wed, 10 Aug 2011 04:00:00 GMT

The Food & Drug Administration approved belatacept (brand name Nulojix) on June 15th for use to prevent acute rejection in kidney transplant patients. This drug is made by Bristol-Myers Squibb and is the first new addition to the current list of immunosuppressive drugs in more than 10 years. Belatacept is approved for use only for kidney transplant recipients who test positive for the Epstein-Barr virus (EBV), so patient selection is an important issue. It is a selective T-cell blocker and is intended for use with other therapies such as corticosteroids, mycophenolate mofetil, and basiliximab induction. Because belatacept use avoids major complications of other anti-rejection drugs, such as hypertension, hyperlipidemia and progressive nephrotoxicity, it has the potential to improve patient and graft survival.

itxNews - New Kidney Allocation Policy Moves Forward

Wed, 10 Aug 2011 04:00:00 GMT

A recent article from the American Journal of Transplantation (2011; 11: 1547-1548) reports that the United Network for Organ Sharing (UNOS) has approved a new kidney allocation policy to replace the current system which is based primarily on wait list time. The new policy offers broad age matching for 80% of kidneys and survival matching between donor organ and recipient for the remaining 20%.

Two major problems with the current allocation system were an impetus to designing the new allocation system: 1. Many valuable extended criteria donor kidneys are discarded, resulting in the waste of this valuable resource, and 2. Many people die with a functioning graft, indicating that the optimal life of a donated organ was not being fully used because of recipient health problems unrelated to the kidney.

When the new kidney allocation concepts were first released to the public in February 2011, they were not well received. The major problem was the impact of the change in policy on older recipient candidates. Kenneth Andreoni, MD, Chair of the Kidney Transplantation Committee says that the new policy will have no real change for the large majority of organs in a local area. The major effect of the new policy will be that a recipient will be less likely to receive an organ decades older or younger than he/she is.

Thomas Mone, CEO and executive vice president of Loss Angeles-based OneLegacy said, “If the primary goals (of changing the allocation policy) are balancing utility and justice, ending death on the wait list, increasing overall graft survival, fulfilling and honoring the wishes of the donors and donor families who make donation possible, then it’s a significant step forward and it’s time to move it from concept to policy.”

It is expected that the new policy will be approved in 2012.

itxNews - Two Executives Retire as National Kidney Foundation Restructures

Mon, 08 Aug 2011 04:00:00 GMT

The National Kidney Foundation announced today that CEO John Davis and Senior Vice President for Health Policy and Research Dolph Chianchiano have retired from their positions.

Read the full article at: http://www.nephrologynews.com/kidney-organizations/article/nkf-restructures-while-ceo-senior-vice-president-for-health-policy-and-research-retire

itxNews - ARPKD Patient Lyndon Baty Featured in Sports Illustrated, "A Boy and His Bot"

Fri, 29 Jul 2011 04:00:00 GMT

When ARPKD patient Lyndon Baty's body started to reject his kidney transplant, it was impossible for him to attend classes with his friends. But Lyndon and his parents found a way. And now, thanks to a robot, Lyndon's dreaming even bigger: he wants to be a sportscaster.

Get the full article from the August 1, 2011 edition of Sports Illustrated Magazine here: http://sportsillustrated.cnn.com/vault/article/magazine/MAG1188682/1/index.htm

itxNews - A Great Gift From Someone Unexpected

Fri, 29 Jul 2011 04:00:00 GMT

Ed David is a detective for the Denver Police Department and crime isn’t the only thing he fights, he also fights against polycystic kidney disease (PKD).

David was diagnosed with PKD at the age of 32 after a motorcycle accident. The disease runs in his family, and he suffered many challenges with the disease and was close to kidney failure.

“The hardest issue of the disease for me was the high blood pressure,” David said. “Later, it would be my energy level and infections from bursting cysts.”

Throughout David’s fight with PKD, he always had supporters.

Detective Danny Veith is the Wellness Officer for the Denver Police Department and his job is to support his fellow officers as they deal with medical issues. He is constantly coming up with ways to better everyone’s health and well being. Danny challenged the entire department to test on David’s behalf.

“I went in for a routine blood draw and met the blood draw tech at Porter Hospital after I gave him my name he said, ‘so you’re Ed David,’” David said. “I asked him how he knew me; he said, ‘I’ve never seen so many people testing for one person.’”

A month had gone by and David received news of a compatible donor. The donor asked to remain anonymous, but a week later, Veith emailed David and said the donor changed his mind and wanted to meet. David asked Veith to come with for moral support and Veith agreed.

Veith, David and his wife met at the Celtic Bar in downtown Denver.

“I was ecstatic, I was going to meet the person who was saving my life,” David said. “We all talked for awhile still not knowing who the donor was. In fact in typical cop humor [Veith] was wondering were the donor was too.”

David said he hoped the donor was not late to the transplant too, and then Veith confessed he would be the one to dona

itxNews - Study Reveals Factors Affecting ADPKD Disease Progression

Mon, 25 Jul 2011 04:00:00 GMT

This is another publication from the National Institutes of Health-sponsored CRISP Study (Consortium for Radiologic Imaging Studies in PKD) that began in 2000 and has followed 241 subjects for 6 years. CRISP was created to identify clinical and imaging markers of disease progression in ADPKD patients which could then be used to evaluate promising therapies.

CRISP participants had total kidney volume and clinical measurements taken at baseline (point zero) and then at years 1 through 6 after the baseline measurement. At the start of the study, the average age of participants was 32 and glomerular filtration rate (GFR) was approximately 90-100 ml/min/body surface area.

For all participants, total kidney volume (TKV) increased from year to year, whereas GFR was found to decrease only by year 6. This study identified three factors that likely affect disease progression in ADPKD: Lower serum HDL-cholesterol, higher urinary sodium excretion and elevated 24 hour urine osmolality were associated with a faster rate of increase in TKV. Serum cholesterol may reflect vascular disease. Higher sodium excretion and urine osmolality may reflect an effect of elevated vasopressin levels on kidney function.

It is not known whether using drugs to modify these three factors will have an effect on disease progression in ADPKD and must be further studied.

FROM:
Potentially Modifiable Factors Affecting the Progression of Autosomal Dominant Polycystic Kidney Disease. VE Torres, JJ Grantham, AB Chapman, M Mrug, KT Bae, BF King Jr, LH Wetzel, D Martin, ME Lockhart, WM Bennett, M Moxey-Mims, KZ Abebe, Y Lin and JE Bost for the Corsortium for Radiologic Imaging Studies of Polycystic Kidney Disease (CRISP)
Clin J Am Soc Nephrol. 2011 Mar;6(3):640-7. Epub 18 Nov 2010

itxNews - PKD Foundation July E-Newsletter

Thu, 21 Jul 2011 04:00:00 GMT

Welcome to the PKD Foundation's July 2011 PKD E-News.  Each month, we strive to bring you the most relevant information on PKD Research, as well as exciting opportunities to Learn and Act. This month, information and opportunities abound, so sit back and enjoy the air-conditioning as you read July's PKD E-News!

Research

Your 2nd Quarter Research Report Card is Here: You won't want to miss this report card, featuring updates and progress in areas of drug development/repurposing, core grants, clinical trials and more! Find out what's new in our mission to deliver treatments and a cure for PKD. View our research report card.

Summer Research Conference Focuses on PKD: A record high of 150 scientists attended the Federation of the American Societies for Experimental Biology (FASEB) conference and discussed cilia, the polycystin proteins and genetics, as well as the latest research results, therapy development and clinical trials. Learn more.

Learn

Finally! Answers to Your Most Pressing Insu

itxNews - Summer Research Conference Focuses on PKD

Sun, 17 Jul 2011 04:00:00 GMT

For the fourth time in nine years, the Federation of the American Societies for Experimental Biology (FASEB) sponsored a summer research conference focused on PKD. The earlier conferences were held in 2002, 2005 and 2008.

The purpose of these conferences is to bring together world experts in renal cystic diseases, along with junior scientists, in an atmosphere that facilitates discussion and interaction, fosters new research collaborations and provides clues for potential therapy development. There were 150 registered attendees, the largest number to ever attend a summer research conference on PKD.

The meeting organizers were Peter Harris, PhD, Mayo Clinic; Jim Calvet, PhD, Kansas University Medical Center; and Dorien Peters, PhD, Leiden University, the Netherlands. The PKD Foundation was the major sponsor of the conference.

Sessions included invited speakers on selected topics, short talks, poster presentations and late breaking research results. The basic science sessions focused on cilia, the polycystin proteins and genetics, areas of great interest to the research community.

In addition, there were several sessions on therapy development and clinical trial updates, including a presentation of the PKD Outcomes Consortium Project by Ron Perrone, MD. The purpose of this project is to provide the FDA with evidence to support the of use total kidney volume as an endpoint in ADPKD clinical trials.

itxNews - Dietary Protein Source Important in Chronic Kidney Disease

Fri, 15 Jul 2011 04:00:00 GMT

Disturbances in mineral metabolism are common complications of chronic kidney disease and often occur in patients beginning at stage 3 or 4 of their disease. For patients with polycystic kidney disease, the kidneys become more damaged from cyst formation and enlargement and become unable to fully excrete a phosphorus load into to the urine to maintain a normal phosphorous balance. Factors, such as parathyroid hormone and FGF23 (fibroblast growth factor) are important in this process and can become elevated in the blood.

However, which protein source the phosphate comes from has turned out to be important.
Researchers, led by Sharon Moe, & colleagues at Indiana School of Medicine, Veterans Affairs Medical Center and Purdue University report that the source of the protein has a significant effect on phosphate balance in patients with chronic kidney disease. A vegetarian diet led to lower serum phosphate levels and decreased FGF23 levels, meaning that it provided a lower phosphate load for the body to deal with.

The Western diet is high in dairy products/meat/casein products and in preservatives, all of which have a high phosphorous content. A vegetarian/grain-based diet has a lower phosphate-to-protein ration. Much of this phosphate is in a compound called phytate, which is not absorbed by most mammals.

A study of the two diets was done in a rat model of chronic kidney disease/mineral bone disorder with animals at 50% normal GFR (comparable to Stage 3 kidney disease in humans). The results showed that rats on total protein and phosphorous from grain-based vegetarian sources had lower serum phosphate levels, urinary phosphate excretion and FGF23 levels. This study was limited by sample size and trial duration; further studies are required to substantiate these effects over an extended period.

Publication: Vegetarian compared with meat dietary protein sou

itxNews - St. Louis Cardinals' Pitcher Brian Tallet Diagnosed with Polycystic Kidney Disease

Tue, 12 Jul 2011 04:00:00 GMT

Excerpt from stltoday.com

To determine the severity of the strained intercostal muscle, Tallet had a CT scan taken last week of his rib cage, and while doctors peered at the results they saw past the ribs and found cysts clinging to Tallet's kidneys. Tallet said he was diagnosed with polycystic kidney disease, or PKD, and that has interrupted his rehab while on the disabled list.

"It's something that I had no idea that I had," Tallet explained Sunday. "Some cases are worse than others. Right now, my case is that all of my levels are normal and everything is fine with them, but I've got cysts in the kidneys. Now, it's just a matter of maintaining the levels that I'm at by drinking more water and not taking anti-inflammatory (medicine)."

Click here for the whole story.

itxNews - June 19 - 25 is PKD Awareness Week - Time to Get Involved

Fri, 17 Jun 2011 04:00:00 GMT

On June 6, the United States Senate passed by unanimous consent S. Res. 205 officially designating June 19 - 25 as PKD Awareness Week. The Foundation is grateful for the continued support of our congressional champions – Senator Herb Kohl of Wisconsin and Senator Orrin Hatch of Utah for their sponsorship of this bill.

Click here to take action and send a note to your Senators and Representative to spread awareness of PKD and our 2011 Legislative Agenda.

Our priorities include:

Welcome to the PKD Foundation's June 2011 PKD E-News! Educating PKD patients is a big part of our mission, and this month we have a lot of information to share, including a free recorded webinar on cardiovascular issues and important news about health insurance and kidney allocation! What makes it possible for us to educate PKD patients? YOUR SUPPORT! Check out how you can Walk or Run in support of PKD research, education, advocacy, support and awareness.

Act

Join Us in the Ring to Knockout PKD: Registration and fundraising for the 2011 Walk for PKD is underway! Have you signed up to step up and fight PKD? If not, now is the time! Sign up today and kick off your fundraising by asking 20 friends to donate $20 each.  Step up to fight PKD NOW!

June 19 - June 25 is PKD Awareness Week: On June 6, the United States Sen

itxNews - Honey Fest, a 3 Day PKD Charity Event Set for August 18-21

Thu, 16 Jun 2011 04:00:00 GMT

The second annual day and night festival to help fight polycystic kidney disease is set for Friday, August 19th - Sunday, August 21, 2011 at Paradise Farm Camps in Downingtown, Pennsylvania.

This year Honey Fest is now a camp out event! Not only that, but the new venue is a beautiful 600 acre summer camp!

Jam, funk, rock, reggae and more - there's sure to be something for everyone! We will have indoor and outdoor stages, kids' activities, late night entertainment and DJ sets!

Tickets are available for $15 each or at the gate for $25 each. Camping passes are $10 more. Kids under 12 are admitted free of charge.

Go to http://www.pkdcure.org/News/NewsArticle/tabid/1566/newsID/156/newsTabID/36/Default.aspx

Report on Public Comments – Kidney Transplantation Committee
Kidney Allocation Concept Document
May 13, 2011

The Kidney Transplantation Committee met by teleconference to review the public comments submitted in response to the release of the new Kidney Allocation Concept Document in February 15, 2011. 264 comments were received. 52% of the comments were opposed to the concepts, 30% were in favor, 5% were mixed in their responses and 13% did not state an opinion. Both professional and patient advocacy organizations provided their input, with the professional organizations in favor of the concepts. The patient advocacy organizations expressed support for the Committee’s efforts but had one or more reservations about the concepts themselves.

The major area of concern in those opposed to the new allocation concepts was, overwhelmingly, age discrimination. The two other areas most mentioned were (1) the lack of changes to geographical boundaries for kidney distribution and (2) the effect of changing allocation concepts on the rate of living kidney donation.

Some Committee members believed that the more negative response from the general public and transplant patients was due to the way in which the concept document was released, generating sensational and inaccurate stories in print, radio and television emphasizing that older recipients would only get older kidneys. Some members said that many comments were in response to these news stories and not to the concept document

itxNews - Kidney Allocation Concepts Document Update

Mon, 06 Jun 2011 04:00:00 GMT

The information below is provided to keep you informed about what is happening with the OPTN proposal for changes to the current kidney allocation system. This information is a summary of the March meeting of the Kidney Transplantation Committee. A public comment period on the new Kidney Allocation Concepts Document closed April 1, 2010, and information about that is not included in this document. We will provide a summary of public comments as soon as those become available.

A link to the full Kidney Allocation report is at the end of this document as well as a link to the Chair of the PKD Foundation’s Scientific Advisory Committee’s comments on the process.

New Kidney Allocation Concepts

The Kidney Allocation Concept Document, which proposed the use of age matching, survivor matching and a kidney donor profile index (KDPI)* in kidney allocation, was released for public comment February 16, 2011. The Kidney Transplant Committee met March 21, 2011, before the comment period closed April 1, 2011, so the Committee did not discuss individual comments.

Instead, it focused on the release of the document to the public, which several members of the Committee felt was poorly done, leaving the public and the media unprepared to understand the concepts. One of the results was the release of sensational stories in print, radio and television emphasizing that older recipients would only get older kidneys. Better preparation for future release of information regarding this important document was needed.

At this point the major concern with the concept document was the issue of age discrimination. More information about age matching needed to be made available: For example, a given kidney would be made available to potential recipients 15 years older as well as 15 years younger than the donor. A kidney from a 40 year old deceased donor would be made available to those on waiti

itxNews - Lower Premiums for Federal High Risk Pool Increases Access to Health Insurance

Fri, 03 Jun 2011 04:00:00 GMT

PKD Foundation

itxNews - PKD Clinical Trials Update Webinar Now Available Online

itxNews - Gage and Quinnlin Roberts Experience Riding in a Blimp Through The Believe in Tomorrow Children's Foundation

itxNews - April PKDnews

It's National Volunteer Appreciation Week!

itxNews - PKD Foundation Celebrates National Volunteer Appreciation Week

itxNews - Denver Chapter Member Andrew Menard has a Whole School Rallying Behind Him

itxNews - Brother Donors

itxNews - The Call

itxNews - A Mother's Gift

itxNews - PKD Foundation Announces New Chief Development Officer

itxNews - PKD Patient and Advocate Valen Keefer Selected by Donate Life America as one of the 12 Inspiring Women of "20 Million in 2012"

itxNews - The Tolvaptan TEMPO 3/4 Clinical Trial is Officially Completed

itxNews - February PKDnews

itxNews - PKD Research Webinar Now Available Online

itxNews - The NIH Offers New Online Resource to Help Increase Awareness of Kidney Disease

itxNews - Dr. Theodore Steinman Named Recipient of the 2012 Medal of Excellence Award

itxNews - United Network for Organ Sharing (UNOS) Kidney Transplant Committee Update

itxNews - 2012 Summer Student Research Program (SSRP) in Polycystic Kidney Disease at Mayo Clinic

itxNews - Proposed Organ Donor-Derived Infection Guideline May Deprive Potential Recipients of Lifesaving Organs

itxNews - President and CEO Featured in New Five-Part Educational Series

itxNews - American Society of Nephrology Holds Annual Meeting

itxNews - The PKD Foundation Supports the NIH FY 2012 Spending Bill

itxNews - Relaxin Improves Poor Blood Flow and Kidney Function in a Rat Model of PKD

itxNews - MODDERN Cures Solution Act Recently Introduced

itxNews - Professor Carsten Bergmann is the 2011 Recipient of PKD Germany's PKD Award

itxNews - November E-News

itxNews - Coping with Grief During the Holidays

itxNews - Founder of PKD Foundation, Dr. Jared Grantham, Receives John P. Peters Award

itxNews - Taking Care of Ourselves: Self-care for the Provider

itxNews - Caregiver Stress and PKD

itxNews - No Scientific Evidence to Indicate Micro-Chinese Medicine Osmotherapy and Stem Cells Transplant are Effective Treatments for PKD

itxNews - Scientists Make Strides Toward Drug Therapy for ADPKD

itxNews - Dr. Jared Grantham Wins John P. Peters Award

itxNews - PKD Foundation Announces New President and CEO

itxNews - ARPKD Study: Mutations in PKHD1 Gene

itxNews - PKD Outcomes Consortium Leaders, FDA Scientists to Meet at Voluntary eXploratory Data Submission (VXDS) Meeting

itxNews - PKD Foundation October 2011 E-Newsletter

itxNews - Tolvaptan in Autosomal Dominant Polycystic Kidney Disease: Three Years’ Experience

itxNews - ARPKD Webinar Now Available Online

itxNews - New PKD Health Notes Blog

itxNews - PKD Foundation September 2011 E-Newsletter

itxNews - Racing – and Fundraising – His Way to the Finish Line for PKD

itxNews - Scientists explore new model in battle against kidney disease

itxNews - Mayo Clinic and Summa Health System Collaborate on Study Treating Polycystic Liver and Kidney Disease

itxNews - Major American Kidney Organizations Appeal for Help from HHS Secretary Sebelius

itxNews - Support the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 1454)

itxNews - Belatacept: Another drug to prevent acute rejection in kidney transplant patients

itxNews - New Kidney Allocation Policy Moves Forward

itxNews - Two Executives Retire as National Kidney Foundation Restructures

itxNews - ARPKD Patient Lyndon Baty Featured in Sports Illustrated, "A Boy and His Bot"

itxNews - A Great Gift From Someone Unexpected

itxNews - Study Reveals Factors Affecting ADPKD Disease Progression

itxNews - PKD Foundation July E-Newsletter

Research

Learn

itxNews - Summer Research Conference Focuses on PKD

itxNews - Dietary Protein Source Important in Chronic Kidney Disease

itxNews - St. Louis Cardinals' Pitcher Brian Tallet Diagnosed with Polycystic Kidney Disease

itxNews - June 19 - 25 is PKD Awareness Week - Time to Get Involved

Act

itxNews - Honey Fest, a 3 Day PKD Charity Event Set for August 18-21

Report on Public Comments – Kidney Transplantation Committee Kidney Allocation Concept Document May 13, 2011

itxNews - Kidney Allocation Concepts Document Update

New Kidney Allocation Concepts

itxNews - Lower Premiums for Federal High Risk Pool Increases Access to Health Insurance

Report on Public Comments – Kidney Transplantation Committee
Kidney Allocation Concept Document
May 13, 2011