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ECRWSS PRESORTED STANDARD U.S. POSTAGE PAID DENTON PUBLICATIONS/ NEW MARKET PRESS PO Box 338 Elizabethtown NY 12932 Postal Patron

SPORTS

pg. 12-13

This week’s highlights Published By Denton Publications Inc.

DIRECTLY MAILED TO OVER

MYCAPTURE PHOTO GALLERIES See photos from all the game action last weekend.

63,000

HOMES EVERY WEEK! Adirondack Journal / News Enterprise

Oct. 14, 2017

suncommunitynews.com

• EDITION •

Coalition aims to reduce use of road salt

CROWD ENJOYS GERMAN BEER, MUSIC AND FOOD AT LAKE GEORGE OKTOBERFEST

Day-long conference brings together state agencies, local officials and environmental groups to address “acid rain” of our time By Pete DeMola

OVER 6,000 PEOPLE gathered for brews, food and live music

EDITOR

LAKE GEORGE | Nate Clemmer’s family wanted to go somewhere warm for Thanksgiving last year. But Lake Placid was about to get hit with their first winter weather event of the season, and Clemmer needed to be there. » Road Salt Cont. on pg. 15

pg. 9

Fundraisers planned to aid family in spinal muscular atrophy fight

Lenna Braunius, aged 7 months, has rare genetic disorder By Pete DeMola EDITOR

JOHNSBURG | Courtney Dunkley’s pregnancy was normal. But one month after Lenna was born, her third child began to show signs of low muscle tone. A series of MRIs and genetic tests followed, and Lenna Braunius was admitted to Albany Medical Center on Sept. 8. Doctors believe Lenna, aged 7 months, has

spinal muscular atrophy, a rare genetic disease that robs people of physical strength by affecting motor nerve cells in the spinal cord. “We knew pretty much from the get-go there was something different physically,” Dunkley said. The life-threatening disease is the leading genetic cause of death for infants. Lenna’s ability to eat independently has been compromised, and she is currently equipped with a feeding tube, allowing her to get the nutrition she needs. She’s being treated with an experimental drug called Spinraza, a regimen that will require quarterly shots for the rest of her life. The manufacturer waived the fees, a godsend considering their $300,000 price tag. “She actually got her first dose a week ago

Thursday, and another this Thursday,” Dunkley said. “Every day she gets a little bit stronger. We’re really hoping to see some results.” Lenna is also engaged in physical and occupational therapy several times per week. While she’s doing well, her parents are grappling with costs. “We’re doing our best as a small community anything we can to help them,” said Ashleigh Lawrence, a family friend who attended Johnsburg Central with Dunkley, 27, and her sister. A pair of upcoming fundraisers are designed to aid the family with costs associated with Lenna’s treatment. A Halloween-themed softball tournament is scheduled for Oct. 21 at 11 a.m. at the Ski Bowl Park in North Creek. A benefit fund-

raiser will follow at Basil & Wicks in North Creek on Nov. 5 at 3 p.m. The tightly-knit community has also launched a crowdfunding campaign that has raised $3,175 to date. Dunkley and Steve Braunius are raising two older children, Vesanti and Sullivan, who are staying with family members while their parents attend to Lenna. Despite the challenges, Dunkley has not been bowed, Lawrence said, relying on her strong religious faith and fighting spirit, one cultivated after a life of athleticism, including softball and field hockey. And she’s never wavered or asked for pity. “She’s just had the best outlook that is possible,” Lawrence said. » Fundraisers Cont. on pg. 2

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