FALL 2019 FALL CompassionateCareALS @comcareALS Roger Clemens raises funds for CCALS tax ID 04-3567819 | www.ccals.org | (508) 444 6775 | Ron Hoffman thanks Roger Clemens for supporting CCALS at the Oldtime Baseball Game This August, on the heels of the Falmouth Road Race, The game was started by sportswriter Steve Buckley in Compassionate Care ALS was the charity recipient of the response to the major league baseball strike in 1994. Since Old Time Baseball Game in Cambridge. This year’s game that time, many future and former major league players have featured former major leaguer and Boston Red Sox Pitcher donned throwback uniforms and taken the field to entertain Roger Clemens and was played in memory of CCALS friend the crowds at St. Peter’s Field in Cambridge, MA. The game and longtime Fenway Park security supervisor, John Welch, raised more than $60,000 for CCALS which will be used who passed with ALS in December of 2018. directly for our ALS patient, family and caregiver program. John’s son Johnny, a former baseball player at St. Anselm P.O. Box 1052, West Falmouth, MA 02574 Falmouth, MA Box 1052, West P.O. | College and a veteran of seven seasons in the minor leagues, batted against Clemens in the first inning. Clemens pitched two scoreless innings and stayed in the game to play first base and to bat until the bottom of the fifth. The near-capacity crowd watched Clemens collect two RBIs and break a bat, now signed and to be raffled off at our gala auction on May 9th. Starting on the mound against Clemens was Shrewsbury High School senior John West, whose dad Ken passed with ALS in 2014 and who was also a friend of CCALS. Compassionate Care ALS Johnny Welch and John West with their moms, Mary and Nancy, at the Oldtime Baseball Game Thoughts From Ron... In Memory Of... Donna Abate, Bronx, NY ALS and the Art of Timing Raymond Barron, Suffield, CT I received the following email last week: That’s why, in my perfect Wanda Ellen Batchelder, Londonderry, NH world, people would be able Judith Brown, W. Springfield, MA Lisa Bullen, Franklin, MA Hi Ron, I reached out to you five months ago when to move through the initial my husband was diagnosed. Judith Carroll, Waltham, MA trauma of the diagnosis, and get Martin Carter, Lowell, MA connected with us right away. Ron Hoffman Everyone told me CCALS was fabulous, but I just Founder Sarah Clark, Narragansett, RI couldn’t set up a meeting. Now I need to. So many This way we can avoid a lot of Royce Cowan, Waynesville, NC questions, concerns and fears have come up since I haphazard information and advice given from Peter Delvecchio, Oldsmar, FL first wrote. Hope to see you soon.—Selma unreliable sources. It’s a timing issue, and a very Barbara Ann DeMarco, Mashpee, MA important one. Think of it as a long walk through Mario Demaria, Bayonne, NJ I get a lot of messages like this from folks the wilderness. There are paths that are much Cheryl Eder, E Falmouth, MA who have heard about us, know they need the smoother and enjoyable, routes that are incredibly Walker Farrar Jr., Canton, MA support but, for a variety of reasons, are unable beautiful. Then there is bushwhacking through Michele Frechette, Scarboro, ME to take action. It is important to acknowledge the bramble. That’s what can happen when those Clifford R. Fuller Jr., Bellingham, MA the trauma of receiving an ALS diagnosis. Most first few steps aren’t well guided. The art of walking Eugene A. “Bud” Garceau, Cumberland, RI Adele Gentry, Whitinsville, MA people, to one degree or another, shut down. this path is very much about what to do and They freeze. Kathleen Gill, Winthrop, MA when to do it. What to learn and when to learn Jean Haffenreffer, Needham, MA it – and more importantly how to learn it. That’s I had another gentleman contact me, wanting to Barbara Heap, Kinnelon, NJ one of our specialties. To anticipate future needs. know how to convince his dad to see me. “I don’t Jenny Hoff, Spokane, WA We’re not here to tell you what you don’t want to know what to do, Ron. I’m sure that speaking Frank M. Jefferson Jr., Carver, MA know or don’t need to know. We are here to ask with you would be helpful, but he resists the idea Donna Marie Johnson, Brockton, MA questions, show up with our radar fully engaged Peter J. Karlovits, Cohasset, MA every time I bring it up.” and really listen; to find out where you are. Exactly Katja Krumpelbeck, Stamford, CT “Does he keep his doctors appointments?” I where you are. And then invite you to learn what Leslie Labrecque, Atkinson, NH asked. may be around the bend, and how to prepare for Michael LaMarra, Scituate, RI it. We are here to invite you to embrace the path Maurice L’Heureux Jr., Amherst, NH “Yes, of course.” and grow from it in the best possible way, and Vincent Lorigan, Haverhill, MA Catherine M. (Spillane) Luna, Dedham, MA most importantly to honor you and your ways. “Then tell him I’m a doctor!” I said, joking. Grant Lynch, Trumbull, CT With gratitude, William “Woody” Mackintosh, New York, NY People will go to their doctor hoping for some kind Carol Marshall, Somerset, MA of a fix, because that’s what doctors are supposed Bryan Todd Mayurnik, Manhattan, NY to do. Our services are harder to understand – not To see the full version of this article, Jean McCaffery, Chelmsford, MA quite as mainstream – so there is resistance, even visit Ron’s blog at ccals.org/blog Mamie McDuffie, Boston, MA though we can really make a difference. Timothy McHugh, Bensalem, PA Linda McNally, Palmer, MA Robert Miller, Indianapolis, IN Ronald Mills, North Easton, MA David Mollon, Avon, MA ALS One License Plates Emanuel Moniz, Braintree, MA Janet Monroe, Easton, MA Compassionate Care ALS is a founding registered with Joanne O’Brien, Natick, MA member of ALS One, a partnership of our plate and Teresa Passaretti, Baton Rouge, LA Richard Pate, Plymouth, MA world-leading ALS researchers, doctors, we are eagerly Jill Pisano, Franklin, MA and care practitioners focused on finding looking forward Janet Riccio, New York, NY treatments for ALS and novel approaches to surpassing our Mary Ellen Robinson, Windham, CT Gihan Sakr, Oxford, CT to improve care. CCALS receives a portion next milestone of Maria Santos, Woburn, MA of the funds raised by ALS One. having 3,000 registered cars by June Beverly Scarlett, Cotuit, MA of 2023. Richard Scott, Berrien Springs, MI Currently, ALS One offers the Ernesto Sendoya, Quincy, MA only license plate in the state of Each plate costs just $40, of which $12 Theresa M. St. Maurice, Marlborough, MA Massachusetts to fund ALS research goes to the state and the remaining $28 Argie Staples, Cambridge, MA Elyse Staropoli, Hillsborough, NJ and care. We are proud that the plate goes to ALS One programs. Every time Jerry Stone, Springfield, OR debuted on the road in July of 2018, you renew your registration, the entire Thomas W. Sullivan, Torrington, CT helping to raise critical awareness and $40 supports ALS One. The plate is Natalie Swift, Warren, RI Kelly Teed, Norwalk, CT much needed funding for CCALS as available to owned or leased cars and can Chris Thalacker, New Canaan, CT well as our ALS One research partners. be purchased at any full-service RMV or Dr. Richard Vinici, Easton, PA There are roughly 850 cars currently online at alsonelicenseplate.org. Toming Wong, Walpole, MA Laurie Wood, Milford, MA FALL 2019 Team Café Martin’s first seven miles for John Donna Abate, Bronx, NY Raymond Barron, Suffield, CT The Falmouth Road Race starting line is packed with thousands water installations, all designed with care and consideration for Wanda Ellen Batchelder, Londonderry, NH of runners, jostling for space as they prepare for their seven mile anyone caring for or living with an ALS diagnosis. Judith Brown, W. Springfield, MA run. Clumped among the thousands is a group of ten runners, Lisa Bullen, Franklin, MA anxious to begin and tackle this race with their shared sense of “Vacationing on the Cape has always been a part of our life as a Judith Carroll, Waltham, MA purpose. Team Café Martin has come to run in memory of their family. Several times during John’s diagnosis we stayed at the Sea Martin Carter, Lowell, MA Crest in Falmouth,” Adrienne said. “They have pretty spacious Sarah Clark, Narragansett, RI beloved friend, John Martin, who passed with ALS in 2018. Royce Cowan, Waynesville, NC handicap accessible rooms that are very nice, but at times it would Peter Delvecchio, Oldsmar, FL Adrienne Martin, John’s wife and one of the ten runners on Team be overwhelming and busy for us as a family. The Center would Barbara Ann DeMarco, Mashpee, MA Café Martin, sits down with us to talk about her experience have been a great place to go and actually retreat to and feel relaxed. Mario Demaria, Bayonne, NJ running her first Falmouth Road Race. This would have just been a gift to have if he was still here.” Cheryl Eder, E Falmouth, MA Walker Farrar Jr., Canton, MA Adrienne arrives at The Heald Michele Frechette, Scarboro, ME “It was comforting to know that CCALS was Clifford R. Fuller Jr., Bellingham, MA Center brandishing a gallon of there to step in when we needed them but was green smoothies in one hand and Eugene A.