Sunday, July 30, 2017

PKD Fundraising, CarrierCheck: DNA Testing, Need Kidneys: Georgia, Gift of Life: Hyattsville, MD, PKD Kidney Breaks Guinness Record

PKD Fundraising

From The Post-Journal, Jamestown, NY, by KATRINA FULLER

Change For Chihopi Fundraiser Expands For Second Year

Bemus Point teens Allyssa Seeley, Cameron Rowe and Taylor Samuelson are gearing up for the second annual Change For Chihopi yard sale fundraiser for Camp Chihopi. This year, the event will not only feature a yard sale, but also a pulled pork dinner and a basket auction. 
P-J photo by Katrina Fuller


Bemus Point teens Allyssa Seeley, Cameron Rowe and Taylor Samuelson are gearing up for the second annual Change For Chihopi yard sale fundraiser for Camp Chihopi. This year, the event will not only feature a yard sale, but also a pulled pork dinner and a basket auction. P-J photo by Katrina Fuller


BEMUS POINT — A few area teenagers are bringing together a bigger and better fundraiser for Camp Chihopi this year.

Taylor Samuelson and Allyssa Seeley, along with Cameron Rowe and Madison Russo are continuing their success with last year’s Change For Chihopi yard sale fundraiser by expanding it. The teenagers will be seniors at Maple Grove High School in the upcoming year, and they are excited to help benefit a camp that gives a great summer experience to children who have had liver or intestinal transplants.

Aside from the yard sale, which will offer hundreds of items, the crew has organized a barbecue pulled pork dinner for early August with the help of Farmer Brown’s and a basket auction with items from businesses across the area.

Camp Chihopi is a part of the Childrens Hospital of Pittsburgh of UPMC, and offers a four-day experience of camp life with other children that have had similar medical experiences. The camp is for children ages 7 to 15 that have received liver and/or intestine transplants.

Last year, Samuelson and Seeley created the Change for Chihopi fundraiser by hosting a yard sale and accepting donations that they delivered in person. The pair worked as camp counselors-in-training last year.

For Samuelson, the fundraiser and volunteering opportunity were highly personal because her brother, Ryan, had attended camp there. He was born with a genetic disorder called autosomal recessive polycystic kidney disease.

Ryan has had four transplants in his life.

This year, Farmer Brown’s has partnered with Chihopi to hold a pulled pork dinner, which will include a pulled pork sandwich, coleslaw, baked beans, a brownie and a drink for $10. A basket raffle with baskets from businesses across the area will also be held, including items and certificates from places like Guppy’s, Honeycomb Hair Salon and Lighthouse Market.

Samuelson said the funds raised will go to a good cause. She said she is glad to see the event is expanding to include other things.

“It just helps to keep it fresh and keep the community involved,” Samuelson said. “Just stop by and see what it’s about.”

Seeley said even the smallest donations help the camp.

“It’s definitely going toward a great cause,” she said. “The children appreciate every bit of it.”

The event is scheduled for Aug. 4,5 and 6 from 9 a.m. to 7 p.m. and will be held at 3635 Route 430 in Bemus Point. To donate directly, visit www.givetochildrens.org/changeforchihopi.




PKD Research

From Eureka Alert

Sema4 partners with Helix to launch CarrierCheck™

A new, easy way for consumers to access a genetic screen for 67 hereditary diseases

THE MOUNT SINAI HOSPITAL / MOUNT SINAI SCHOOL OF MEDICINE

Sema4, an interdisciplinary health information company focused on empowering people to take charge of their health and data, today announced the launch of CarrierCheck™, a simple saliva-based test that provides individuals with a snapshot of how their DNA may affect their future children. CarrierCheck, the only carrier test that screens for 67 conditions that can be ordered by consumers online, was developed in collaboration with Helix, a personal genomics company that today launched the first online marketplace for DNA-powered products.

"Sema4 and Helix are perfectly aligned in their missions to help consumers gain greater access and understanding of their personal genomic data," said Sema4 CEO Eric Schadt, PhD. "We are excited to launch CarrierCheck, our first product on the Helix platform, to empower consumers with the understanding of their own DNA and gain insights useful to their future family planning."

While many companies, including Sema4, currently offer physician-ordered carrier screening tests, CarrierCheck stands apart in providing individuals with an online ordering pathway to a genetic test with easy-to-understand results that can reveal an individual's probability of being a carrier for any of the 67 hereditary conditions tested-- including cystic fibrosis, sickle cell disease, and polycystic kidney disease.

The process is simple: A consumer purchases CarrierCheck on helix.com and is then directed to the Sema4 website to create an account and complete a brief health history questionnaire. A physician from Sema4's partner network reviews the health history to ensure CarrierCheck is appropriate for the individual. Once approved, a saliva collection kit is mailed to the consumer. The saliva sample is then sent to Helix's CLIA- and CAP-accredited Next-Generation Sequencing lab, where Helix sequences the DNA and securely stores it for the customer. The portion of genetic data relevant to CarrierCheck is delivered back to Sema4 for analysis. Each customer can track their test and then view their personalized CarrierCheck report via their online Sema4 account, and genetic counseling services are also available to help customers understand their reports.

"We have been working with the Sema4 team since before their spinout from Mount Sinai, and we are proud to be working with a partner that is committed to pairing clinical-grade interpretation with our high-quality sequencing," said Justin Kao, Co-Founder and SVP of Helix. "Carrier screening is one of the most well-known and sought after types of DNA tests, and we are proud to feature CarrierCheck in our marketplace to provide people with an accessible carrier screen that also offers genetic counseling support."

Helix's proprietary technology, called Exome+, reads every letter of all 22,000 protein-coding genes in your body, which produces 100 times more data than most consumer genetics companies. CarrierCheck is available to purchase for $199 plus a one-time cost of $80 for the Helix DNA kit for new customers. With Helix, consumers only need to get sequenced once to access CarrierCheck and other products on the Helix marketplace. CarrierCheck and the Helix DNA kit are now available for purchase on the Helix website.




Gift of Life

From Hyattsville Life, Maryland, BY SANDY LUNDAHL

Chelsea School administrator with PKD receives ‘greatest gift’ from student’s father



Kristal Weems-Bradner, Interim Co-Head and Middle Division Principal at the Chelsea School in Hyattsville, shakes hands with Alec Casey at his graduation recently. In June, Alec's father Chris (not pictured) donated a kidney to Weems-Bradner, who has polycystic kidney disease. Photo courtesy of Pete Broyles, Chelsea School


There are many stories about educators who change students’ lives. But sometimes, it’s a student — or their family — who changes the life of an educator.

Kristal Weems-Bradner was diagnosed with polycystic kidney disease in her late 20s, a genetic disorder that runs in her family and can result in kidney failure. Now 48, Weems-Bradner has been on daily, peritoneal dialysis for more than two years. Weems-Bradner is the Interim Co-Head and Middle Division Principal at the Chelsea School in Hyattsville.

“My mother, some of my aunts and many of my cousins, including male cousins, all have the disease,” Weems-Bradner said. She says her mother received a kidney from a deceased donor that lasted for 6-7 years and then she returned to dialysis for the remainder of her life. Her mother died in January 2016.

“I knew what to expect,” said Weems-Bradner.

Polycystic kidney disease (also called PKD) causes numerous cysts to grow in the kidneys. These cysts are filled with fluid. If too many cysts grow or if they get too big, the kidneys can become damaged. PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure, according to the National Kidney Foundation.

Weems-Bradner was on the transplant list, on dialysis and waiting for a deceased donor while friends and relatives were tested to see if any of them were a match. Her son, the best match, was disqualified when they learned he also has the gene for polycystic kidney disease.

Many people who need organ and tissue transplants cannot get them because of a shortage of donations, according to the National Kidney Foundation. Of the 123,000 Americans currently on the waiting list for a lifesaving organ transplant, more than 101,000 need a kidney, but only 17,000 people receive one each year. Every day 12 people die waiting for a kidney.

Two years ago, Weems-Bradner spoke to a biology class at Chelsea School about how kidneys function and different ways they stop working. After the class, Alexander (Alec) Casey offered her something precious: Alec offered to donate one of his kidneys. Unfortunately, donors must be at least 18 years old.

Fast forward two years.

“I’m 18 now,” said Alec, who recently graduated from Chelsea School. “Do you still need that ‘thing’?” he asked Weems-Bradner. “I want to give you my kidney,” Alec says he told Weems-Bradner the day after his 18th birthday. “She told me that I had to talk with my parents.”

With his parents’ approval, Alec went through the questionnaire process, but stopped when he learned — incorrectly — that people with tattoos could not donate. Rather, prospective donors are advised not to get a tattoo before donating because of the risk of infection.

That’s when Alec’s father, Chris Casey, 66, stepped in and went through the same extensive process and found out that he was a perfect match for Weems-Bradner.

Chris wanted to give back to a school and school official who had given so much for his son.

“It’s because of my affection for Weems-Bradner and the [Chelsea] school,” said Chris. “My son had been in public school and was not receiving the academic support he needed. Within 18 months of attending [Chelsea] he made substantial progress despite his dyslexia and ADHD. He received the highest score in the ACT reading test and was declared ‘college-ready.’”

Chelsea School is a small college-preparatory school for students with learning disabilities or Attention Deficit Disorder or Attention Deficit, Hyperactivity Disorder. Chelsea School serves students in grades 5 through 12.

“We try to build strong relationships with our students and family,” Weems-Bradner said. Each teacher becomes an advisor to two or three students, she explained, and stays in contact weekly with the family initially and then at least monthly to inform parents of their child’s progress and to find out about potential problems as early as possible.

“She [Weems-Bradner] changed my thinking about school and life,” Alec said. “When I first came to [Chelsea], my main purpose was definitely not school. I was fighting a lot. She gave me lots of advice and we had a really good connection. I would call her more than my advisor whenever I needed help.”

Weems-Bradner says she is “blown away” when she thinks about Chris’s donation of his kidney to her. She described her feelings in a Facebook post on June 30, 10 days after surgery:

I am an African American woman and I need to thank a white man for saving my life. In this day and age of such turmoil, especially between the races, … What are the chances of this man being a direct match when I had been waiting on the transplant list for 2 years without any potential matches (living or cadaver). On June 20th, Chris donated a kidney to me. This is one of the greatest gifts anyone has ever given to me. I am eternally grateful to [the Casey] family, for they are truly a blessing to me. … We are surrounded by hate, distrust and malice [and yet] there is truly good in the world, and there is truly hope!

Donation is not risk-free; it carries the same risk profile as having an appendix removed, says Give a Kidney, a charitable organization that promotes altruistic or non-directed living kidney donation. But it’s important to know that it is generally considered very safe to live with one kidney. Most people with one kidney live healthy, normal lives with few problems, says the National Kidney Foundation. In other words, one healthy kidney can work as well as two. [Read more]




Living with PKD

From WJBF, ABC Affiliate, Evans, GA By Samantha Williams

Local family in desperate need of kidneys


Polycystic Kidney Disease runs in the Browning family’s genes and has shown up in three generations so far. This family is heartbroken over recent news. A mother and a daughter are in desperate need for kidney transplants, but since the disease runs in the family, other family members can’t help.

Doctors recently told one of them that it’s crucial to get a transplant by the end of this year.

“I just want to see Jenna Claire grow up. She wants to be a vet, so I want to see that,” Angie Moon said.

She went to the doctor in December and found out her kidney function had dropped to 25 percent. When she went back just three months later, it had dropped rapidly to 18 percent. That’s when doctors told her she needs a kidney transplant by the end of the year or she will be put on dialysis.

“I knew what my long term life would be, would be dialysis, bad kidneys, transplant, but my mom didn’t have those problems until age 65. I figured I had more time. I didn’t think I would be sitting here at 43,” Moon explained.

It all started with Angie’s grandfather. He was 62 years old and at the stage where he needed to be put on dialysis, but he passed away before that was possible.

Angie’s mom, Phyllis Browning, was diagnosed with Polycystic Kidney Disease nearly 30 years ago and has been on MCG’s transplant list for the last four years. Like her father, Phyllis said she never talked much about her need for a kidney.

“That’s kind of been my theory since ’89… to live my life as best as I can, and if it’s God’s will that I get a kidney, I’m all up for is play,” Browning said.

But that all changed when her daughter, Angie, got blood results in March. Angie said she hasn’t fulfilled everything she’s destined for here on earth, yet. She said God isn’t finished using her.

“I know his plan for me would be a living donor because a living donor’s kidney gives me 25 years without dialysis, and if I take a deceased donor, it’s only good for ten years,” Moon said.

And Angie’s daughter, Jenna Claire, said she not only hopes her mom and granny find donors, but she hopes she doesn’t have to deal with the disease and heart ache in her lifetime.

“It kind of made me feel a little worried… yes, technically worried. I want her to be at all of my performances. I would say donate if you can,” Jenna Claire said.

“If this touches your heart, and you feel like you want to donate to my mom or me, don’t hesitate, whether it’s your blood type or not,” Moon said.

Jennifer Browning, Angie’s sister, will also need a kidney at some point in the future. You can be the answer this family is so desperately praying for. Angie said you can contact the transplant locations and request to be a donor.
She explained the process is not difficult and will be completely paid for by their insurance.

If you feel compelled to donate, call the transplant centers: Phyllis is at Augusta University Medical Center: 706-721-2888. Angie is at the Medical College for South Carolina: 843-792-1594.




From The Sun, United Kingdom, By Lizzie Parry, Digital Health Editor

RECORD BREAKING Doctors remove the world’s largest kidney from man – and it weighs MORE than a newborn baby

 Doctors have removed the 'world's largest kidney' from a man at Dubai Hospital

Doctors have removed the 'world's largest kidney' from a man at Dubai Hospital

Ahmad Saeed, 56, from Dubai, suffered polycystic kidney disease causing giant cysts to engulf his kidneys.

DOCTORS have removed the "world's largest" kidney from a man in Dubai.

The organ weighed 9lbs 3oz - more than an average newborn baby.

And the 56-year-old patient also had his second kidney, which was also severely enlarged, removed.

The operation took place at Dubai Hospital, after the man complained he was unable to walk or talk - and he is now living on dialysis while waiting for a kidney transplant.

Surgeons operated on Ahmad Saeed, taking out both of his enlarged kidneys, after diagnosing him with polycystic kidney disease.

It had caused several cysts to form on the man's kidneys.

The larger of the two measured 34cm by 17cm in diameter, and weighed 9lbs 3oz.

In contrast, a normal kidney measures around 12cm by 6cm and weighs 5oz.

Doctors at the hospital said the kidneys are the largest ever reported.

The last world record, they noted, was set at 4lbs 6oz.

Mr Saeed's polycystic kidney disease, caused his kidneys to swell in size.

"Before the surgery, I felt so tired and had an enlarged stomach. I couldn’t walk properly and I just wanted to stay in my room with the door closed." Ahmad Saeed

They grew so big they were soon crushing his internal organs, forcing him to undergo surgery.

Mr Saeed told how his failing health led him to become depressed and withdrawn.

He said: "Before the surgery, I felt so tired and had an enlarged stomach.

"I didn’t feel like talking to friends or going out at all.

"I couldn’t walk properly and I just wanted to stay in my room with the door closed.

"Now, I am back to normal, I can move, I can jump and I can run. No one believes that I have had both kidneys removed."

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