Compassionate Care ALS | P.O. Box 1052, West Falmouth, MA 02574 | (508) 444 6775 | www.ccals.org | tax ID 04-3567819 ALS in2014and whowasalsoafriendof CCALS. High Schoolsenior John West, whosedadKen passedwith Starting onthemound againstClemenswasShrewsbury signed andtoberaffledoffat ourgalaauctionon May 9 crowd watched ClemenscollecttwoRBIs andbreak abat,now and tobatuntilthebottomof thefifth. Thenear-capacity two scoreless inningsandstayed inthegame toplayfirstbase batted againstClemensinthefirstinning.pitched College andaveteran ofseven seasonsintheminorleagues, John’s sonJohnny, aformerbaseballplayer atSt. Anselm who passedwithALSinDecember of 2018. and longtimeFenway Park securitysupervisor, John Welch, Roger ofCCALSfriend Clemensand wasplayed inmemory featured formermajorleaguerandBostonRed Sox Pitcher Old Time Baseball Game inCambridge. This year’s game Compassionate Care ALSwasthecharityrecipient ofthe This August, ontheheelsofFalmouth Road Race, Roger ClemensraisesfundsforCCALS Ron HoffmanthanksRogerClemensforsupportingCCALSattheOldtimeBaseballGame th . directly forourALSpatient,familyandcaregiver program. raised more than$60,000forCCALSwhichwillbeused the crowds atSt. Peter’s Field inCambridge,MA. The game donned throwback uniformsandtakenthefieldtoentertain that time,manyfuture andformermajorleagueplayers have response tothemajorleaguebaseballstrikein1994.Since Steve by sportswriter The gamewasstarted Buckley in Johnny Welch andJohn Westwiththeir moms, Maryand Nancy,  CompassionateCareALS at theOldtime Baseball Game

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@comcareALS

FALL 2019 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, , 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. “Bud” Garceau, Cumberland, RI willing to step out when we needed that as well. Adele Gentry, Whitinsville, MA a box of homemade scuffins (her Kathleen Gill, Winthrop, MA original scone/muffin hybrid) in The work Ron and CCALS does and provides is Jean Haffenreffer, Needham, MA nothing short of miraculous.” Barbara Heap, Kinnelon, NJ another. She is energetic, passionate and thoughtful; she’s brought these Jenny Hoff, Spokane, WA Team Café Martin honored John’s memory by raising over Frank M. Jefferson Jr., Carver, MA delicious treats to show her gratitude $23,000 as a road race team. They leveraged peer-to-peer Donna Marie Johnson, Brockton, MA to CCALS staff for all that they have fundraising and held a team event at a local restaurant, all to Peter J. Karlovits, Cohasset, MA Adrienne Martin visits The done to support her family. Adrienne Katja Krumpelbeck, Stamford, CT Heald Center, sharing her support CCALS. “It was tough running 7 miles, I’m a jogger, settles in, and begins to discuss the Leslie Labrecque, Atkinson, NH amazing morning smoothie not a runner. John always kept going though, so I knew I had and scuffins with us! driving force behind Team Café Michael LaMarra, Scituate, RI to keep going too. Our team was amazing! The heart, time and Maurice L’Heureux Jr., Amherst, NH Martin’s decision to run for CCALS. Vincent Lorigan, Haverhill, MA effort they put in to make Team Cafe Martin so successful was Catherine M. (Spillane) Luna, Dedham, MA “After John’s passing we wanted to give back as much as we could so inspiring. This is yet another way our community shows their Grant Lynch, Trumbull, CT and kept asking each other what was next,” she says. The timing was love and support for John, our family, and the causes we care William “Woody” Mackintosh, New York, NY about. I am so grateful for our team and our community.” Carol Marshall, Somerset, MA perfect; Adrienne saw that CCALS was recruiting runners for the road race and rallied nine of her and John’s closest friends and family. Bryan Todd Mayurnik, Manhattan, NY Adrienne recounts her experience running the Falmouth Road Jean McCaffery, Chelmsford, MA This was their chance to support other families living with ALS. Mamie McDuffie, Boston, MA Race, noting that, “no matter what cause or organization you are Timothy McHugh, Bensalem, PA “About six months after John’s diagnosis he asked me if I reached supporting everyone is so encouraging.” Adrienne celebrated her Linda McNally, Palmer, MA out to the organization whose information we had received. I accomplishment of finishing Falmouth for John with a victory Robert Miller, Indianapolis, IN hadn’t, of course. I remember I was sitting in the Stop & Shop swim in the cool, cleansing waters of the Atlantic Ocean. Ronald Mills, North Easton, MA parking lot one day and broke down. I needed support, so in that David Mollon, Avon, MA The 2019 Falmouth Road Race raised over $240,000 to support Emanuel Moniz, Braintree, MA moment I reached out to that organization, CCALS, and sat on our ALS Patient, Family, and Caregiver Program thanks to Janet Monroe, Easton, MA the phone with Erin. An instant wave of relief came over me.” Joanne O’Brien, Natick, MA individuals like Adrienne and teams like Team Café Martin. The Teresa Passaretti, Baton Rouge, LA At that point, CCALS entered John’s journey and came to know the Falmouth Road Race is one way we ensure all families have the Richard Pate, Plymouth, MA Martin family very well. “I did not have to reinvent the wheel,” Adrienne same care and compassion that Adrienne, John and their family Jill Pisano, Franklin, MA experienced and we are extremely grateful to all of our runners for Janet Riccio, New York, NY says, “CCALS had the answers to our questions and concerns.” Mary Ellen Robinson, Windham, CT your support in making that happen. Gihan Sakr, Oxford, CT One of the biggest headaches and obstacles Adrienne dealt with Maria Santos, Woburn, MA through John’s journey was health insurance. “There are so Beverly Scarlett, Cotuit, MA many edges that need to be touched and it is impossible for one Richard Scott, Berrien Springs, MI person or family to touch and tend to all of the aspects that come Ernesto Sendoya, Quincy, MA Theresa M. St. Maurice, Marlborough, MA with this disease. That is exactly what CCALS does; it brings Argie Staples, Cambridge, MA everything full circle. The amount of stress they were able to take Elyse Staropoli, Hillsborough, NJ off of me as a caregiver was tremendous.” Jerry Stone, Springfield, OR Thomas W. Sullivan, Torrington, CT Sitting in the library of the newly completed Heald Center, Natalie Swift, Warren, RI Adrienne admires the space and the detail in each room. These Kelly Teed, Norwalk, CT details are immediately evident to any individual or caregiver Chris Thalacker, New Canaan, CT Dr. Richard Vinici, Easton, PA who has lived with ALS. Toilet seats with automatic washlets, Toming Wong, Walpole, MA ADA accessible entryways, shower chairs, and ramps, relaxing Team Cafe Martin after finishing the 2019 Falmouth Road Race. Laurie Wood, Milford, MA FALL 2019

The Compassionate Care ALS Heald Center; Education, Retreat, and Sanctuary is now open accessible blueberry patch. Or perhaps spend your day in discussion in the sunshine on the deck. You decide what your time at the Center looks like, based on what you need from the experience.

“The Heald Center is an extension of CCALS’ no-questions asked, it’s all about compassion,” says Renier De Beer, an ALS patient who stayed at the Center during this year’s Falmouth Road Race. “It is a center of peace and a chance to meet those in different stages of ALS, take time to unwind, break bread and be as one. My family and I left reset, with our spirits lifted, fulfilled by the love we felt at this beautiful retreat.”

The Holly Ladd library, located in the main building, contains wheelchair If the West Falmouth weather turns south, head inside to spend accessible seating, dimming lights, and a variety of reading selections. quiet time in the library or watch birds swoop by the large Turning into the driveway on Chase Road, you hear the sounds windows on the indoor porch. Sessions in the yoga studio or sauna of crushed stone under tires and robins chirping softly in the can help caregivers and those in the early stages of ALS take time back yard’s nature preserve. Whether you are walking or wheeling to unwind and find their center. In the evenings, gather round the around the property, you’ll have no trouble navigating; all main fire pit or retire to the cozy, calming space of your room. floors and grounds of the buildings are handicapped accessible. The Heald Center is now open, thanks to the support of our The only places on the property that are not fully accessible are astounding CCALS community. Contact Ron Hoffman at caregiver’s rooms, located on the top floors looking over the koi [email protected] with inquiries. pond and blueberry patch and offering a reprieve from the daily effort of tending to and caring for those diagnosed with ALS.

Matthew Rothwell, who is living with ALS, reflects on his recent weekend visit to the Center. “Along with all the comforts of home at the Heald Center, the outdoor gardens were peaceful and tranquil for everyone to enjoy. It was comforting meeting other families going through similar challenges, sharing stories, laughing, and forming friendships.”

The CCALS Heald Center, Education, Retreat, and Sanctuary is a place like no other for individuals living with ALS and caregivers alike. The back yard is perfect for quiet contemplation. To be in the moment or to reflect on the past, present, and future. Have a sensory experience, so rare after a certain point in an ALS diagnosis, The main entrance of the Heald Center features a large accessible ramp picking, smelling and maybe even tasting blueberries in the that flows over the koi pond and connects to the blueberry patch.

CCALS Gala to be held at Boston Park Plaza Compassionate Care ALS is excited to announce that our 2020 Gala to help Penner in his new role as Stacy’s primary will be held on May 9, 2020 at the famous Boston Park Plaza and caregiver. We are honored to have Penner attend features special guest . An Oscar Nominated actor, the gala and share the story of his family’s screenwriter and producer of films and television including the journey with Amyotrophic Lateral Sclerosis. feature filmsThe Bye Bye Man and The Last Supper, Penner is best known for his three seasons as a contestant on the CBS megahit, This year’s Gala will feature live and silent SURVIVOR. In early 2018, Penner’s wife, partner and fellow Oscar auctions as well as many surprises. All proceeds nominee , was diagnosed with ALS. After her diagnosis from the 2020 CCALS Gala support individuals, Jonathan Penner their two adult children moved back into their home families, and caregivers living with ALS. and Stacy Title

How You Can Help: If you are interested in volunteering at the Gala or have auction items that you would like to donate to our silent or live auction, please contact Richelle at [email protected].