Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32 Page 33 Page 34 Page 35 Page 36 Page 37 Page 38 Page 39 Page 40 Page 41 Page 42 Page 43 Page 4438 March Home&Garden Matters 2017 Cohen shared his idea with neighbors and friends and soon a regular group – called the Brine Trust – began meeting, eventually leading to the formation of the Pickals Foundation (note the ALS at the end of Pickals). Today, ten people sit on its Board of Trustees and they raise funds by selling Pickals at events and in local establishments, including Bagel Chateau and Stony’s. The profits are donated to ALS research and patient support programs. Beth Hebron was working as a paralegal in Washington, D.C., when she was diagnosed at the age of 25. No longer able to care for herself, she moved back to her parents’ home in Maplewood shortly thereafter. Her father, Bob, quickly became an expert in the disease and channels his energy into raising funds to develop promising drugs for ALS as well as lobbying for expedited drug development and approvals. Together, Bob and Beth started a non-profit called Hope NOW for ALS and they also function as ambassadors for the ALS Therapy Development Institute (ALS.net), a non-profit research lab in Cambridge, Massachusetts. A drug is currently in process that they hope will slow the progression of the disease. To make it happen, they need to raise 1.3 million dollars. Danni Michaeli, whose husband Dave Adox lost his fight with ALS in May 2016, has found his life transformed in yet another way. During Adox’s illness, they actively raised funds for ALS research, but Adox was also determined to donate his organs upon his death, a fitting culmination of the mantra he adopted during his illness, “Until further notice, celebrate everything.” When the time came, the couple was met with an unexpected and disheartening array of legal challenges and complexities. Despite having an advance directive that enabled Adox’s ventilator to be disconnected when he could no longer communicate on his own, the legal powers at University Hospital in Newark were unwilling to accommodate the request for organ donation. To them, this had the appearance of assisted suicide. Michaeli, however, quickly reached out to other hospitals, and Mount Sinai agreed to Adox’s wishes – to grant new life, even in death – enabling his liver and kidneys to be donated. A direct match was made for one of the kidneys; Michaeli has a photo of the recipient. Michaeli is determined that other families don’t experience the same barriers to organ donation. He is actively telling his story so that new protocols relating to organ donation for ALS patients might be drafted and adopted. These three families have come together for both a cure and better patient support. In the process, they have been overwhelmed by the support of the Maplewood-South Orange community. Now they offer another opportunity: to attend a casino night event, Bet on a Cure for ALS, sponsored by the Pickals Foundation, on March 25 at SOPAC. Their hope is to raise more funding that will result – sooner rather than later – in a cure for ALS. Ellen Donker is grateful to the Cohen, Hebron and Michaeli families for telling their stories and to Beth Daugherty, Pickals Foundation Board President, for facilitating the discussion. Clockwise from top left: Danni Michaeli, Bob Hebron, Janet Coviello and Arthur Cohen. BESTSUMMEREVER South Mountain YMCA 17+ different camps for ages 2½ - grade 10 For more information, visit SMountainYMCA.org or call 973 762 4145. NEW CAMPS FOR 2017 Super Hero Academy (Entering Kindergarten - Grade 2) Build It (Entering Grades 2-4) Register Today! You Tube Summer Camp at the Arboretum: Ever Green. Ever Fun. Ever Better. Register now at: www.HartshornArboretum.org Summer campers will experience everything they love about us and the great outdoors. They’ll also enjoy our newly reno- vated Stone House Nature Center, filled with hands-on green science. We’re the best—inside and out.