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Palmyra family joining NephCure Walk - Burlington County Times Story!

The story below in the BCT is about my son and our participation in the NephCure Walk this Sunday...  

YAY, BILLY!!!  But I ask that you please help by supporting TEAM CHRISSY and the NephCure Foundation by make a donation on behalf of Chrissy, a sweet Palmyra Harbour resident!!!  She battles the same horrible, progressive renal disease as my son, Billy... FSGS.  

Chrissy received a transplant from her sister, and two weeks later FSGS returned to destroy the new kidney. : ( 

Find out what's happening in Cinnaminsonwith free, real-time updates from Patch.

Chrissy is walking strong on behalf of many patients who require your support and the NephCure Foundation to find a cure!!!

Thank you for your consideration to make a donation!!! 

http://www.kintera.org/i.asp?id=1057136-0&teamId=5718572

Find out what's happening in Cinnaminsonwith free, real-time updates from Patch.

Palmyra family joining NephCure Walk

By Peg Quann Staff writer | Posted: Friday, October 11, 2013 12:00 am

PALMYRA — Lori Genstein’s only child, Billy Mallon, 28, has multiple challenges — developmental delays complicated by diabetes and a rare kidney disorder with no cure. Yet Mallon smiles brightly as he shows a medical alert bracelet he must wear.

On Sunday, both mother and son hope to be at Cooper River Park to join in the sixth annual NephCure Walk to raise money for mysterious kidney disorders called nephrotic syndrome and focal segmental glomerulosclerosis (FSGS). These diseases attack healthy kidneys of young people and can even return to affect a transplanted organ if patients receive one when their own kidneys have failed.

The borough residents will be there to cheer on the team of their neighbor, Chrissy McCoog, also of Palmyra, who received a transplant from her sister, Joanne Nemeth of North Carolina, more than two years ago in hope that it would cure McCoog’s FSGS. Her disease returned and is attacking her transplanted organ.

Mallon has the same disorder.

Genstein said she wouldn’t have known her son had the condition if not for a urine test he took to check his diabetes when he was 18. It showed protein in his urine, which led to more testing that showed he had FSGS. Mallon developed these diseases in addition to a genetic condition he was born with called Williams syndrome. It causes developmental delays but also is characterized by “striking verbal abilities, highly social personalities, and an affinity for music,” according to the Williams Syndrome Association.

That’s Mallon. He held out his hand to meet a stranger and said how much he likes to go to the gym at the Katz Jewish Community Center in Cherry Hill for workouts.

For his mother, Mallon’s FSGS is the most disconcerting problem because it is “silent,” as it destroys the kidneys. Mallon can’t verbalize his symptoms, including high blood pressure. Thankfully, the protocol his doctors at the Children’s Hospital of Philadelphia have him on seems to be keeping the FSGS under control.

“You never know when the kidneys are going to stop functioning from FSGS,” Genstein said. “We smile each day as if nothing is happening.”

For her, a single mother who runs I’ve Got the Scoop, a pet-sitting and caregiving service, around her schedule of caring for her son and his doctor appointments, “inside, it’s torture.”

The two hope to help NephCure raise funds through Sunday’s walk, which will take place, rain or shine, at the park in Pennsauken at 10 a.m. Registration begins at 9.

The event will include a disc jockey, activities for children, refreshments, and “dozens and dozens of raffle baskets,” said Lou Antosh of Cinnaminson, McCoog’s father and a former NephCure president. State Sen. Fred H. Madden Jr., D-4th of Washington, Gloucester County, will serve as honorary chairman of the walk.

Antosh said 18 NephCure walks will be held throughout the country this fall, contributing to the mission to find the cause of and cure for nephrotic syndrome and FSGS.

“NephCure has been the key organization raising funds for the scientific research that is being done in major institutions throughout the nation, and has been instrumental in committing more than $13 million to such research,” he said.

For more information about the walk, contact Kim Cooley at kcooley@nephcure.org or 610-540-0186, ext. 18.

http://m.burlingtoncountytimes.com/news/local/palmyra-family-joining-nephcure-walk/article_ab1bb076-746b-5b87-a6e7-911cc67f548b.html?mode=jqm


Hope everyone had a tail waggin' purrrrfect week!  

Lori

I've Got the 'Scoop'!, LLC, in Palmyra

Pet Love, Enrichment, and Care... 
as though YOU were there!!! 

(856) 906-7111

http://www.IveGotTheScoop.net

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