PKD Voice, To Paris, Walking, Cruis'n, Delay Progression

PKD Voice

From PKD Foundation

Bring Your Voice to Capitol Hill

The PKD Foundation partners with other organizations to participate in annual legislative and public policy conferences in Washington, D.C. After participating in advocacy training, we spend a day on Capitol Hill meeting with our members of Congress, to both raise awareness for PKD and discuss our legislative priorities for the year.

We invite you to visit our recently updated Advocacy Action Center where we have tools for you to advocate from home year-round. If you would like to receive emails about PKD advocacy efforts, please visit Advocacy Alerts to sign up. Thanks for your support!

Rare Disease Week
Feb. 29 - March 3

The PKD Foundation is joining Rare Disease Legislative Advocates (RDLA) to bring ARPKD families and rare disease community members to Washington, D.C. from across the country to learn about federal legislative issues, meet other advocates and share their unique stories with legislators.

The PKD Foundation will reimburse up to $600 for travel expenses including airfare and hotel for advocates attending the legislative conference and meetings on Capitol Hill. Please note: to receive reimbursement, you must contact us for registration information at pkdadvocacy@pkdcure.org.

For additional information about the event, visit Rare Disease Legislative Advocate's website.
Schedule of Events
Monday, Feb. 29, 7:30 a.m. – 3:30 p.m.: Rare Disease Day at the National Institutes of Health (NIH)
Monday, Feb. 29, 5:30 – 9:30 p.m.: Cocktail Reception and Rare Disease Documentary Screening featuring Dusty’s Trail: Summit of Borneo
Tuesday, March 1, 8:30 a.m. – 5 p.m.: Legislative Conference - Required for reimbursement
Wednesday, March 2, 7:30 - 9 a.m.: Lobby Day Breakfast
Wednesday, March 2, 9 a.m. – 5 p.m.: Scheduled Meetings with Members of the House and Senate - Required for reimbursement
Thursday, March 3, 12 – 1 p.m., Congressional Rare Disease Caucus Briefing
Thursday, March 3, 5 – 7 p.m.: Rare Artist Reception



PKD Fundraising

From PR.com

Polycystic Kidney Disease Fundraiser Aims to Top Record

The Hamilton Chapter of the PKD Foundation of Canada’s first annual dinner-dance benefiting Canadian research on polycystic kidney disease (PKD) raised more than $6,000 – the highest amount by any chapter’s debut fundraiser for the charity. This spring, the Hamilton Chapter will be stepping up again to try and top $7,000 at its HOPe FOR A CURE in March – National Kidney Month.

Hamilton, Canada, February 24, 2016 --(PR.com)-- As fundraisers go, this one has proven to be uniquely successful, thanks in large part to the lively music, which appeals to people of all ages.

“The plan is to hold an affordable family-friendly, fun night out; it’s easy to have a great time knowing you’re helping a good cause,” says Joy Pekar, Event Organizer.

The PKD Foundation of Canada is the only national organization exclusively devoted to providing support for polycystic kidney disease patients and raising funds for scientific study of the inherited disease that affects about 1 in 500 people worldwide.

An Italian themed dinner generously sponsored by Gordon Food Service, and swing era music performed by the Jumpin’ Jive Band will keep people hopping between 6pm and 11:30pm on March 5 at Germania Club, 863King Street East in Hamilton, Ontario.

“HOPe FOR A CURE 2016 promises to be bigger and better, with the amazing items that have been rolling in for the silent auction as well,” said Shiona Mackenzie-Morrison, Chapter Coordinator.

Tickets, $25 in advance or $30 at the door, are available online through Eventbrite, or by calling the PKD Foundation of Canada.

Contact

Hamilton Chapter, PKD Foundation of Canada
S Mackenzie-Morrison, Hamilton Chapter Coordinator
1-877-410-1741
Contact
www.endpkd.ca/index.asp
Jeff Robertson
endpkd@endpkd.ca

From Melton Times, United Kingdom

Kidney patient gears up for 388-mile charity cycle ride to Paris before life-changing transplant

A Wymeswold man due to receive a kidney from his mum this summer is planning to cycle all the way to Paris before that to raise funds for charity.

Dan Norcott and his two friends, Rich Moss and Andy Stafford, will be taking on their 388-mile cycle challenge from Wymeswold to Paris between May 4 and 15 to raise money for the Kidney Care Appeal, a joint venture between Leicester’s hospitals and the University of Leicester.

Dan (41) has polycystic kidney disease (PKD), a genetically transmitted illness where cysts develop in the kidneys and gradually increase in size, disrupting the function and almost inevitably leading to them failing.

Dan’s father, who died in 2004, also had the condition.

Dan said: “Since I was diagnosed at the age of 21, my kidney function has coasted gently downwards. I’ve just entered the last phase of the illness. My mum is going to give me a kidney and, sometime this summer, I’ll be ill enough to need it.

“In short, I’m very lucky. I’m ill but a treatment is available and I have someone willing to give me a gift that could extend my healthy life by a decade or more. Many people at this stage experience great pain, but I have very little, and my symptoms are mostly just a drowsiness and general lack of pep.

“I find it hurts to stand upright for more than a few minutes, but fortunately walking and cycling are largely free from pain, if a little slower than normal.”

Dan, who is married to 2012 Man Booker prize-shortlisted author Alison Moore, is planning to complete his epic bike ride in three sections over 10 days, covering about 45 miles a day. The first leg (132 miles) will take Dan and his friends from Wymeswold to London, the second leg onto Newhaven (107 miles) and the final leg from Dieppe to Paris (149 miles).

The trio set an initial target to raise £5,000 but hope to beat that. You can sponsor them by visiting https://www.justgiving.com/Pedalling-to-Paris-with-PKD/5

For more information about their challenge visit http://pedallingtoparis.com/

From Michigan City LaPorte, Indiana

Cruis'n For a Cure for PKD

Sunday, May 15, 2016
12:00PM - 2:30PM

Cruis'n For a Cure for PKD Car show and Car cruise.

Car Show and 40-mile car cruise, $10 per vehicle, all wheels welcome. Rain or Shine. Concessions, trophies, prizes, LaPorte County Fairgrounds

Walk for PKD

Saturday, September 17, 2016
9:00AM - 11:30AM

Walk for PKD.

Northern Indiana Walk for PKD – 2-Mile Walk Sat, Sept 17, 2016. Check in 9am; Walk 10am at Creek Ridge County Park – Michigan City, IN. For more information, please contact Walk Coordinator,northernindianawalk@pkdcure.org. Polycystic Kidney Disease (PKD) affects thousands of Americans and 12.5 million children and adults, worldwide. There is no treatment or cure, but there is hope. Walk, form a team, help with the committee, volunteer and more! Register online and take advantage of a host of effective and Free online team features like emailing members, tracking team progress and fundraising tools. Contact the PKD Foundation for more information on how you can help.www.pkdcure.org. Come join us.www.walkforpkd.org/northernindiana.

Gift of Life

From State Journal-Register, Springfield, IL, By Dave Bakke

Dave Bakke: Former high school sweetheart pays debt with kidney donation

Corey Having and Lindsey Leonhard dated for four years in high school and went to four proms together; two of his at A-C Central and two of hers at Virginia High School. But that is not the only reason Corey holds a special place in Lindsey's life. She went through a lot of stress in those days.

"When Corey and I met," says Lindsey, "I was having lots of family turmoil. I was 13 and had depression. He was my best friend. He was there when I needed somebody. I always hold myself personally in debt to him. I don't know what would have become of my life without him."

After high school, there came a time in their relationship when Lindsey was ready for the city while Corey preferred the small-town life. So they went their separate ways.
That was about 10 years ago. We come to present times and it is Corey who is desperately in need of someone.

"I have PKD," he says. "It's a kidney disease that starts with a cyst that grows until it shuts down your kidneys."

Polycystic kidney disease runs in Corey's family. His father died from complications related to the disease. The Mayo Clinic estimates that nearly half the people who have PKD suffer kidney failure before age 60.
Corey, 28, was first diagnosed after he broke his back at age 14. His kidney cysts have grown to the point where he requires dialysis every other day. Last year, his doctor told him he had to have a kidney transplant. He was put on the national list for people in need of donors.

"They say it's five years before you even get a shot at it," he says, "unless you have a live donor."
The word went out through social media. Corey has sisters, but they were ruled out as donors because of the family history of PKD. So it looked bleak until someone from the past stepped up — his old high school sweetheart, Lindsey.

She's 25 now and had stayed in touch with Corey and knew what was happening with his health. Last fall, Lindsey volunteered to be tested at Memorial Medical Center as a possible kidney donor. She was found to be a match for Corey, but he tried to talk her out of being a donor.

"I didn't even want her to be tested," he says. "There's always a fear that something will happen to the one kidney the donor has left, and I didn't want that for her. I even went to her mom and tried to get her to talk her out of it."

That was a non-starter. Lindsey's mother, Dennise Minor, not only didn't try to discourage Lindsey, Dennise has become her daughter's biggest supporter in this.

From Green Bay Press Gazette, by Samantha Hernandez, USA TODAY NETWORK-Wisconsin

Town of Union woman with no kidneys needs donor

A Union woman is looking for a kidney donor after a possible donor was unable to take part in the procedure.

Misty Scudder, 26, was diagnosed with polycystic kidney disease (PKD) when she was in eighth grade. Scudder explained that the disease is genetic and causes cysts to form in the kidneys. If the cysts burst it can cause more problems. Scudder’s birth father also has the disease.

“The more they rupture, the bigger they get,” Scudder said.

About four months after the birth of her son, Isaiah Jr., her condition began to rapidly deteriorate. Doctors found that two large blood clots in her brain had ruptured. She underwent an operation to stop the bleeding in November 2014. Afterward she was in the hospital for five weeks.

“After that they told me I was going to be in kidney failure because the dye from the surgery … my kidneys could not filter it because of the PKD,” she said.

She went from having stage III kidney disease to stage V.

She has been on dialysis since July 2015. At first she was having the procedure done three times a week and now does peritoneal dialysis in her home each night.

The hardest part of Scudder’s journey is she had someone ready to donate. Unfortunately, in December doctors found protein in the donor’s urine. The protein is an indicator of possible kidney problems.

While Scudder, who is O positive, can live on dialysis, she is hoping someone will step forward and volunteer to be a donor.

"I don’t feel like a normal person,” she said.

PKD Research

From American Journal of Physiology

Concomitant use of rapamycin and rosiglitazone delays the progression of polycystic kidney disease in Han:SPRD rats: A study of the mechanism of action

BACKGROUND AND PURPOSE: Attributing to their anti-proliferative effect, both rapamycin and PPARγ could halt the progression of ADPKD. Whether combined use can enhance effect is unknown. EXPERIMENTAL APPROACH: The present study used rapamycin and the PPARγ agonist rosiglitazone concomitantly to observe their effects on the proliferation of ADPKD cyst-lining epithelial cells and the progression of ADPKD in Han:SPRD rats. KEY RESULTS: Concomitant use of the two drugs inhibited the proliferation of WT9-12 cells significantly through a superimposition effect. Rosiglitazone inhibited the phosphorylation of mTOR target p70S6K. Concomitant use of rosiglitazone and rapamycin further down-regulated the p-p70S6K level. Rosiglitazone also inhibited the phosphorylation of Akt and antagonize the activation of Akt induced by rapamycin. Concomitant use of rosiglitazone and rapamycin significantly retarded the deterioration of renal function, decreased cyst cell proliferation and interstitial fibrosis in Han: SPRD rats. Rapamycin significantly increased cholesterol levels in the blood, whereas rosiglitazone mitigated rapamycin-induced hyperlipidemia. CONCLUSION AND IMPLICATIONS: These results indicate that the effects of concomitant use of rosiglitazone and rapamycin in inhibiting the proliferation of WT9-12 cells and delaying the progression of ADPKD in Han:SPRD rats are stronger than those of either drug alone. The present study may provide a new strategy for the long-term treatment of ADPKD.