PORTSMOUTH — Fifteen-year-old Ellary Kinnane of Portsmouth, who lives with Nemaline Myopathy (NM), cannot eat, breathe or walk on her own. She is wheelchair-bound, and uses a ventilator day and night to allow her to breathe due to this rare neuromuscular disorder that causes muscle weakness of varying severity throughout the body.

On Sunday, Oct. 8, at Sunset Cove in Island Park, Ellary’s mom, Cindy Kinnane, along with Kara Niewohner, will be fund-raising for A Foundation Building Strength (AFSB), a charitable organization that is exclusively dedicated to finding treatments for Nemaline Myopathy and supporting the NM community. (Note the change in date; the event was originally scheduled for Saturday, Oct. 7.)

Niewohner, who had met Ellary, knew she wanted to help because she knows firsthand how valuable a strong foundation can be when you are in need of support, and how important community is. When she was faced with a diagnosis of a rare and aggressive type of breast cancer, she felt afraid and lost. But she went online and learned about AFBS, which invests in promising research worldwide, bringing them closer to clinical trials and treatments — and finding hope.

On Nov. 5, Niewohner, a Portsmouth resident, will be running 26.2 miles in the NYC Marathon to raise funds for AFBS and Nemaline Myopathy. 

When Cindy Kinnane approached Sunset Cove owner Mike Macfarlane about having a fund-raiser, he quickly offered them to have a table at the Oktoberfest this Sunday. There will be live music, food trucks, café food and desserts. Ragged Island will host a beer tent. There will be kids activities and more. 

At the fund-raising table, there will be opportunity drawings for gift baskets donated by local businesses and local residents. Donations will be collected to support AFBS.

Sunset Cove is located at 706 Park Ave. The event on Sunday will run from 7 a.m. to 10 p.m.