COMPASSIONATE CARES FALL 2020 HELP US TURN THE SCREEN GREEN ON NOVEMBER 14! November 14, 2020 7pm EST/4pm PDT Join Compassionate Care ALS’ first virtual fundraiser, Turn the Screen Green, in support of individuals living with ALS, their families and caregivers on Saturday, WAYS TO GET INVOLVED November 14th at 7pm EST/ 4pm PDT. Funds raised Visit screengreen.org to learn more from this event will expand CCALS programs to meet the increased need brought on by the COVID-19 pandemic. Attend and support the event th Turn the Screen Green will be Join us on November 14 to celebrate CCALS and hosted by Oscar-Nominated honor our ALS community. The event is free to actor, screenwriter, producer attend. Donations are encouraged in order to provide and SURVIVOR contestant, support to our ALS families during the pandemic. Jonathan Penner and his wife, partner and fellow Oscar nominee Stacy Title. Purchase a Party Package The evening will feature Enjoy the full experience by purchasing a Party appearances by celebrity Package full of high-end goodies to celebrate the guests including Seinfeld’s night of the event. Each party box costs $300 and Jason Alexander, SURVIVOR contains party materials for two, including insulated JONATHAN PENNER Champion Yul Kwon, The wine tumblers, a mood-setting candle, and a Tito’s AND Princess Bride’s Cary Elwes, cocktail kit among many other surprises. Each box also STACY TITLE Author Lisa Genova and other contains a special scratch-off ticket and one winner surprise guests! You’ll hear stories of how your support will take home the grand prize, to be announced soon! has impacted people living the day-to-day reality of ALS, Order your box before Friday, October 30th for free have the chance to win incredible auction items, and delivery! Boxes purchased after 10/30 will cost an even mix up a signature Tito’s cocktail. Founder/Executive additional $40 to cover express shipping. Director Ron Hoffman will also share updates on our programs and expansion. Bid on auction items This year has presented unanticipated challenges for Bid on incredible silent auction items including one-on- everyone, CCALS included. All of our in-person events one Zoom sessions with celebrities and a personalized have been cancelled until further notice to ensure the design-your-own clutch experience. You can register to health and well-being of our families, supporters, and bid at screengreen.org and be the first notified when community. We hope you join us for a unique and new auction items are added! interactive experience on November 14th to come together even while we are physically apart! P.O. Box 1052, West Falmouth, MA 02574 | ccals.org | @comcareALS tax ID 04-3567819 CONNECTING WITH THE ALS COMMUNITY THROUGHOUT COVID-19 Compassionate Care ALS responded to the COVID-19 pandemic with the same commitment we always embody; keeping our families safe and providing them the resources they need to live with ALS. Our operations changed in a variety of ways, including a temporary halt of in-person home visits to protect families and staff from potential risk of exposure. Below several of our staff share their personal stories of this transition and how they used new platforms and protocols to support the community we serve. Erin Lajeunesse, of someone and that’s tough to get her families. “I now have a different Senior Family Care Liaison through Zoom.” appreciation for what it’s like to be in lockdown, to be in one space. Although Erin and CCALS colleague Eileen I can’t fully understand living with ALS, Garry regularly conduct Caregiver I can relate with loneliness and isolation Gatherings on Zoom in order to provide in a different way,” she says. our community the support they need during this time. These gatherings have been a continuous way to connect while everyone is apart. Erin says that the Travis Schneider, Zoom sessions can be a release from Equipment Program Director the surface-level communication we oftentimes have through screens. “I love when you can see the emotion come out during these meetings. Once it happens, then everyone starts being ERIN AND HUSBAND, ERIC, AT THE authentic and real. It’s a release and CCALS GALA everyone feels heard and supported. I’ve had many happy moments on our Visiting with our families and “showing Zoom meetings because I realize how up” is a major part of what CCALS much people still need that connection. does. Senior Family Care Liaison, Erin I’ve found that using humor and sharing Lajeunesse, does just that. Erin used to my personal struggle with quarantine drive hundreds of miles every week to TRAVIS AND HIS WIFE, KATIE, CHILDREN isolation opens a lot of doors to honest SLOANE AND KOLTON, AND DOG, TITO meet her families with enthusiasm and conversation.” dedication to authentic communication. Part of CCALS programming is When the COVID-19 lockdown first Now that CCALS has started making providing appropriate Durable Medical started, she transitioned to a fully in-home visits again following approved Equipment (DME) to individuals remote role for four months. The guidelines, Erin’s work has shifted to a and families. If you’ve had equipment time she usually spent driving and hybrid model. She’s back on the road installed, you most likely have met our visiting with families in-person became visiting families, always with her mask amazing Equipment Program Director, meetings with families via phone call or and her purple chair in tow which she Travis, who drives all over the East Zoom. sets up so she can stay six feet apart. Coast to make sure families get the Some of her families still prefer virtual tools they need. Travis’ procedure for Erin says this shift to virtual contact visits, so she spends a few days of the handling and delivering equipment has comes with positives and negatives. “The week working from home to hold those good thing is that eliminating the travel meetings. shifted greatly during COVID-19. time made more time for helping people in different ways. I could speak to more “The worst thing is not being able to hug “Before COVID I had hands on all The people than if I was spending hours my families,” Erin explains. “My favorite DME we provide to families. I would driving.” thing about this job is the connection, enter people’s homes, chat with them, and I am so grateful to be able to see set up and demonstrate equipment The downside is not having the same the families that want me physically use. I am still delivering and picking up type of communication a face-to-face there while still supporting those who DME, but I’m leaving it on doorsteps meeting brings. “I want to be in front of prefer a phone call.” and explaining how things work over people,” Erin explains. “I want to see the Zoom or on a phone call.” nonverbal communication, the nuances She says her time working from home that help me in my job. There’s a lot during COVID-19 also allows her to Although he’s still delivering DME you can pick up when you’re in front connect more deeply with some of from New Jersey to Maine that makes CONNECTING WITH THE ALS COMMUNITY THROUGHOUT COVID-19 Compassionate Care ALS responded to the COVID-19 pandemic with the same commitment we always embody; keeping our families safe and providing them the resources they need to live with ALS. Our operations changed in a variety of ways, including a temporary halt of in-person home visits to protect families and staff from potential risk of exposure. Below several of our staff share their personal stories of this transition and how they used new platforms and protocols to support the community we serve. life easier and more accessible for I ask if they have a nurse or caregiver “My favorite part of the job was individuals with ALS, Travis also spends who is familiar with the equipment. They connecting with people. With COVID-19, about six hours a week on the phone usually are, which makes it a lot easier there’s a lot less of that now. It is still or on Zoom calls. During these calls, he and then I can answer any additional encouraging to see people waving from explains equipment set-up, installation, questions.” windows, or standing on their doorway or use. He often works with caregivers to to chat while I am out in the yard. But help them implement new equipment in Travis explains that he is grateful that I can’t wait until we are able to have their day to day lives. CCALS is still able to provide DME to that direct contact with people again. “When I used to bring equipment in, a families during the pandemic, but that Getting to know the families I work with lot of time I would demonstrate. Now he misses the interactions. is the most meaningful part of my job.” THOUGHTS FROM RON Take the Chance to Go Within by Ron Hoffman The days and times of our lives become reduced participation and funds I encourage RON HOFFMAN vividly more precious when we are raised for CCALS. The pandemic also everyone to greet FOUNDER confronted with a fatal illness. Our ALS meant cancelling our biennial Gala. the challenge of families have taught me that. Everyone We are so lucky that our generous these pandemic times. Yes, we are reacts to the trauma of an ALS diagnosis donors recognized our situation and unable to engage in most of the in different ways, but unconsciously or stepped up with the funding to make social activities we have relied on for consciously we understand one thing it possible to continue our work with connection.