{"id":9954,"date":"2016-05-31T17:16:10","date_gmt":"2016-05-31T21:16:10","guid":{"rendered":"http:\/\/www.tcnjmagazine.com\/?p=9954"},"modified":"2016-06-02T12:10:45","modified_gmt":"2016-06-02T16:10:45","slug":"channeling-grief-into-action","status":"publish","type":"post","link":"https:\/\/www.tcnjmagazine.com\/?p=9954","title":{"rendered":"Channeling grief into action"},"content":{"rendered":"

 <\/p>\n

\"Jodi\"
Jodi DeMarco O\u2019Donnell-Ames \u201988<\/figcaption><\/figure>\n

In 1995, as a\u00a0language arts teacher, O\u2019Donnell-Ames turned to books first, searching for one that could help her explain things to Alina. There weren\u2019t any. Nor could she find a support network for kids whose parents had ALS \u2014 the progressive neurodegenerative disease also known as Lou Gehrig\u2019s Disease.<\/p>\n

Today O\u2019Donnell-Ames offers such resources through her own nonprofit. But back in the late ’90s, pulled between a toddler who was gaining skills and a husband who was losing them, she says she really could have used them herself.<\/p>\n

After Kevin died in 2001, O\u2019Donnell-Ames eventually met an ALS widower, Warren; they were married in 2004. He had two children, Nora and Adam, both about Alina\u2019s age. \u201cMy goal became raising three kids who were all grieving, and getting all five of us in a good place,\u201d says O\u2019Donnell-Ames.<\/p>\n

At some point in that healing process, she says, she realized that it\u2019s hope \u2014 not misery \u2014 that loves company. The revamped maxim became her inspiration for Hope Loves Company, the nonprofit she founded in 2012 to support kids whose family members have ALS.<\/p>\n

The organization sends out care packages, offers free books (O\u2019Donnell-Ames wrote a picture book called The Stars That Shine<\/em> and edited Someone I Love Has ALS: A Family Caregiver Guide<\/em>), and plans family days. But its main focus is Camp HLC, a three-day, overnight camp that started in North Jersey and now has iterations in New York, Indiana, and Massachusetts. About 200 kids have attended so far, and O\u2019Donnell-Ames says she recently received grants to fund two more sites. The free weekends combine summer camp staples \u2014 fires, sing-alongs, a talent show \u2014 with sessions on the effects of stress and the benefits of meditation. (Kids whose parents have ALS are usually balancing caregiving duties and extra chores with the usual challenges of childhood, says O\u2019Donnell-Ames.)<\/p>\n

\u201cThe whole purpose is for these children to realize they\u2019re not alone,\u201d she says, noting that because ALS is so rare, kids don\u2019t normally know anyone else in their situation.<\/p>\n

As she spoke, O\u2019Donnell-Ames was getting ready to call an 18-year-old whose mother was at the end of a battle with ALS. She makes similar calls daily. The conversations are difficult, but they illustrate what O\u2019Donnell-Ames\u2019s sees as her mission: channeling her own grief into action.<\/p>\n

\u201cI can\u2019t change what happened, and it was a horrible situation on so many levels,\u201d she says. \u201cBut at least I\u2019m not wallowing. I think I\u2019m honoring Kevin\u2019s life and his legacy by continuing his fight in this unique way.\u201d<\/p>\n

\u2014Molly Petrilla<\/p>\n","protected":false},"excerpt":{"rendered":"

Alumna finds purpose helping children with family members battling ALS.<\/p>\n","protected":false},"author":63,"featured_media":9940,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-9954","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-alumni-corner"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=\/wp\/v2\/posts\/9954","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=\/wp\/v2\/users\/63"}],"replies":[{"embeddable":true,"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=9954"}],"version-history":[{"count":0,"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=\/wp\/v2\/posts\/9954\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=\/wp\/v2\/media\/9940"}],"wp:attachment":[{"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=9954"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=9954"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.tcnjmagazine.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=9954"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}