{"id":897935,"date":"2026-10-28T20:40:20","date_gmt":"2026-10-28T20:40:20","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/897935\/"},"modified":"2026-10-28T20:40:20","modified_gmt":"2026-10-28T20:40:20","slug":"tickets-on-sale-for-gala-helping-families-impacted-by-eb-a-rare-genetic-disease","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/897935\/","title":{"rendered":"Tickets on sale for gala helping families impacted by EB, a rare genetic disease"},"content":{"rendered":"

Tickets are now on sale for the second annual Fragile Wings Fierce Hearts gala, an event inspired by a Wisconsin mother\u2019s mission to help her daughter and other families affected by a rare genetic disease.<\/p>\n

The gala will take place Saturday, Feb. 6, 2027, from 5 to 11:30 p.m. at Shully\u2019s Watermark in Thiensville. The evening will include dinner, auctions, raffles, music and dancing. Michael Hund, CEO of EB Research Partnership, will serve as the keynote speaker. <\/p>\n

Watch below: <\/p>\n

Local Mom Turns Daughter\u2019s Rare Diagnosis Into a Fight for Awareness and a Cure<\/p>\n

Mary Steck founded the nonprofit after her daughter, Mackenzie, was diagnosed with recessive dystrophic epidermolysis bullosa, or RDEB.<\/p>\n

\"Mary<\/p>\n

TMJ4<\/p>\n

Mary Steck and daughter<\/p>\n

According to the organization, Mackenzie was born with skin missing from parts of her legs, feet and hands. The condition makes her skin so fragile that even a slight touch can cause blistering and tearing.<\/p>\n

Her care includes lengthy dressing changes and moments, including a hugs, must be approached carefully.<\/p>\n

\"Mackenzie<\/p>\n

Fragile Wings Fierce Hearts<\/p>\n

Mackenzie with dressings<\/p>\n

Steck turned her family\u2019s experience into an effort to raise awareness and fund research.<\/p>\n

The organization says its previous sold-out gala raised more than $155,000 for EB research. <\/p>\n

People can support the fundraiser by attending, becoming a sponsor, donating auction items or making a financial contribution.<\/p>\n

Tickets and additional information are available at fragilewingsfiercehearts.com<\/a> <\/p>\n

Let’s talk:<\/p>\n

Hey there! At TMJ4 News, we’re all about listening to our audience and tackling the stuff that really matters to you. Got a story idea, tip, or just want to chat about this piece? Hit us up using the form below. For more ways to get in touch, head over to tmj4.com\/tips. <\/p>\n

It\u2019s about time to watch on your time. Stream local news and weather 24\/7 by searching for \u201cTMJ4\u201d on your device.<\/p>\n

Available for download on Roku, Apple TV, Amazon Fire TV, and more.<\/a><\/p>\n

Report a typo or error<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Tickets are now on sale for the second annual Fragile Wings Fierce Hearts gala, an event inspired by…\n","protected":false},"author":2,"featured_media":897936,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[50],"tags":[200,79,143853],"class_list":["post-897935","post","type-post","status-publish","format-standard","has-post-thumbnail","category-genetics","tag-genetics","tag-science","tag-tmj4-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/897935","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=897935"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/897935\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/897936"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=897935"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=897935"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=897935"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}