Dexter Woman Joins International Board to Fight Rare Disease

by Timothy W. Scee II
Special to Newzjunky.com
Published February 1, 2011

DEXTER, N.Y.  —  A north country woman whose grandchildren are affected by a rare metabolic disorder, Niemann-Pick Disease, has been chosen to represent the nearly 300 affected throughout the country and 1,200 nationwide.  

In November 2010, Kathleen A. Lane, Dexter, was tapped as a potential board member of the National Niemann-Pick Disease Foundation Inc. after word spread of her fundraising efforts to help fight the disease.  

“When the nominating committee met late last year, Mrs. Lane and the fundraising efforts by the family were mentioned and the committee agreed she would be a good candidate to be on the board,” Lane’s daughter, Danielle E., said in a press release.  

In October 2010, the Lane and Parody families raised nearly $20,000 with a fundraiser for the NNPDF at the Brownville American Legion, 101 Washington St.  

Lane’s daughter and son-in-law, Denesha M. and Justin M., Dexter, have two children, Collin, 12, and Cohen, 4, both of whom are afflicted with Niemann-Pick Disease. The youngest was diagnosed first, soon before the elder of the two was found to have an enlarged spleen as a result of also having the disease. 

“For the kids that have Niemann-Pick Type B, they’re really good compared to some of the other kids that have it,” Mrs. Parody said. “They’re definitely on the best end of the spectrum.”  

According to the NNPDF, there are three types of the disease, A, B and C. The Parody children, affected by Type B, lack a lipid metabolization enzyme normally produced by the body. Over time, the non-metabolized lipids add up within the cells, “causing cell death and the malfunction of major organ systems,” according to the organization’s website.  

Individuals with Niemann-Pick Disease Type B may often live into adulthood, while those affected with Type A rarely survive childhood, according to the NNPDF. 

“All in all, they’re doing very well,” Parody confirmed. 

Lane will travel Friday to Milwaukee, Wis., for the 2011 Annual National Niemann-Pick Disease Foundation Inc. (NNPDF) Board Meeting, which will be held Feb. 4-6. 

“Most of the board members have family members that are affected or some whose children are affected,” Mrs. Parody said. “She contacts them all the time for all the fundraising we do for it.” 

The Lane and Parody families say another fundraiser is in the works to help raise “lacking” aid for the disease later in the month. 

On Saturday, Feb. 26, the families will host a wine tasting and hors d’oeuvres night at the Ives Hill Country Club, 435 E. Flower Ave., from 4-6 p.m. Entertainment will be provided by local musician Mark Chauvette.  

Pre-sale tickets may be purchased for $50 by contacting Lane at 778-7079, or by e-mail at: collincohen10@yahoo.com. Seating is limited to 125 guests.  







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