Leonard Florence Center for Living (LFCFL) resident Patrick O’ Brien and a group of supporters make their way through the course during the 10th annual LFCFL Walk for Life on Admiral’s Hill last Sunday, Sept. 30. The walk was reported to be the biggest and most exciting since its inception 10 years ago.
The ALS Walk for Living on Admiral’s Hill, run by the Leonard Florence Center for Living (LFCFL), will host its 10th
In its milestone 10th year, the Leonard Florence ALS Walk for Living on Admiral’s Hill is being coordinated by Maura Graham, who came to the LFCFL in January. She said they are in the middle of crunch time for the Sept. 30 walk, but are excited how things are coming together. The walk is expected to attract residents of all ages, including several high school students from Chelsea, Everett and Malden Catholic.
annual walk this coming Sept. 30, and new Director Maura Graham said she is ready for another great event.
“This is my first year as walk director, but I’ve had the good fortune of having the previous walk director sty on to consult and help me,” said Graham. “Now we have 10 years of walks and so we have some history under our belts and it comes together really well. It’s huge for us. It’s our only fundraise at Leonard Florence and 100 percent of the proceeds go towards resident care.”
The Walk for Living benefits ALS and MS patients at the LFCFL, and helps them to be able to do unique activities. It is the only fundraiser for the home, which exclusively cares for those with ALS and MS. As an example, last year several residents with ALS were able to use proceeds from the walk to go to Disney World in Florida.
The walk is a family activity, and Graham said they have a lot of fun things to do in addition to the walk for families and young adults.
Matt Siegel of Kiss 108 will once again be the emcee of the event, this being his fourth year of participating in the walk.
In addition, Phyllis and Alan Bolotin of Swampscott have been named the Walk for Living Ambassadors this year.
“They have been very good to the Leonard Florence over the years and they have graciously accepted the roles of Walk Ambassadors,” said Graham. “They’ve been wonderful and have a huge team coming.”
Also coming will be hundreds of students.
One of the unique things about the Walk for Living is the fact that high school students from Chelsea High, Everett High and Malden Catholic participate and learn about ALS. Many eventually befriend the residents and gain an understanding of what it is to live with ALS or MS.
“Everett, Chelsea and Malden Catholic will all be participating and will have a big group,” said Graham. “Malden Catholic will be bringing a large group because they are honoring Brother Joe (Comber), who lives here at the Leonard Florence. The fact that so many young people participate is wonderful and shows a great sense of unity with the residents here and the community. It is multi-generational.”
Another aspect of the walk is that many of the residents who are benefitting from the fundraising participate side-by-side with the fundraisers. Many even bring their own teams.
“It is a rare thing to be able to walk side-by-side with the people you’re helping,” she said. “It’s a sense of camaraderie.”
Graham came to the LFCFL in January and previously worked in public relations and marketing for the Cambridge Office of Tourism and the Harvard Square Business Association.
“The minute I walked in to the Leonard Florence, I felt it was a great fit,” she said.
Graham lives in Melrose and has two young children.
To sign up for the Walk for Living, go to WalkForLiving.org. Registrations are also accepted the day of the event. Registration is $20 and kids 12 and under are free. Students are $10.
The event begins at 10 a.m. on Sept. 30, 165 Captain’s Row.
By Paul Koolloian
Chelsea Firefighters were kept quite busy over the weekend responding to two serious fires that broke out at two high-rise developments on Admirals Hill, including one at the Leonard Florence Center for Living (LFCFL).
The first fire, which occurred Friday morning, April 8, almost turned tragic when ,according to reports circulating local media outlets, 96-year-old Charles Lanzillo (a former Chelsea Record employee) became trapped inside his third floor apartment after materials being used to renovate the apartment caused a sudden explosion and fire.
He was rescued by his daughter, former Chelsea Director of Public Buildings Joan Lanzillo, who happened to be visiting him at the time of the fire.
Firefighters responded to Box 915 at the Chelsea Village Apartments at 5 Admirals Way after receiving an alarm activation and a telephone report of a fire on the third floor. Chelsea E3 under the command of Acting Lt. Purcell was in the immediate area and first to arrive.
Upon arrival they reported a heavy smoke condition and fire that was contained to one apartment on the third floor and requested the next due Engine Company to fill the standpipe systems so they could charge an attack line on the fire.
After arriving on scene, Deputy Chief Ulwick assumed command and immediately ordered the working fire. Crews from T1 and L2 assisted E3 in quickly knocking down the main body of fire while crews from E1 and Everett E2 and L1 who were specially called to the fire to assist with search/rescue and evacuation of residents on the upper floors. Members of the Chelsea Fire Investigation Unit, as well as the State Fire Marshals Office, also responded to the scene. Power was also terminated to the affected areas. The fire is currently under investigation.
The second fire occurred on Saturday morning, April 9, as Firefighters responded to the LFCFL located at 165 Captains Row after Chelsea Fire Alarm received a Box Alarm activation from the facility. While en route, a call was received reporting a stove fire on the sixth floor. Upon arrival, firefighters under the command of Deputy Robert Cameron encountered a heavy smoke condition as well as a stove fire that was extending to the walls and ceiling in the east wing kitchen on the sixth floor.
Crews from E2 and L1 utilized the fifth floor standpipe to knock down the main body of fire as crews from E1, 3 and L2 along with facility staff safely evacuated and sheltered several residents into the west wing until the fire was brought under control.
Cataldo Ambulance crews also responded to the scene to evaluate several patients on the fourth floor complaining of respiratory issues. Chelsea Fire Prevention and members from ISD also responded to the scene.
The fire is under investigation
By Seth Daniel
Don’t hold it against him, but Mike Robbins is a New York Yankees fan.
Despite being the newest resident of the newly expanded Leonard Florence Center for Living (LFCFL) ALS Home, the Staten Island native brought with him his Yankees gear, but a great new appreciation for Boston and the community of Chelsea – even if the Red Sox don’t exactly appeal to him just yet.
“I rolled in here with a Red Sox hat on so they wouldn’t ask me to leave,” he said with a laugh at the new home recently. “I figured I’d keep it on until later this spring and then break out the Yankees hat and jersey and by then they couldn’t make me leave. I’ve never had something so great as this happen to me in my entire life. Everything just fell in line and quickly. If I wouldn’t have been able to come here, I would have probably ended up in a nursing home, and they just aren’t equipped to handle ALS. This gift that they got here required them to take some New York patients. That’s the only reason I’m here now is that family decided to fund this. Otherwise, I’d still be sitting on the waiting list. It’s like a dream to me.”
That dream for Robbins, 60, started quite some time ago when he was diagnosed with ALS and was living in an apartment in New York that wasn’t accommodating to a wheel chair. He was also heavily reliant on his daughters and felt he was taking away from their lives. All of that sparked he and his family to apply for a spot at the LFCFL, but the waiting list was daunting. While he qualified, the likelihood of him getting a spot was slim to none.
Then came along a donor from New York City who wanted to pledge $17.5 million to open another ALS home at LFCFL, with an immediate $5 million gift to fund the expansion. The commitment, said Chelsea Jewish Foundation President Barry Berman, came with a promise to raise the rest of the money over the coming years.
The expanded home will be known as the McDonald ALS Home.
Already, one home exists at LFCFL and was designed by resident and ALS patient Steve Saling. The cutting edge design leans heavily on technology to level the playing field for patients with the degenerative disease and allow them to have a high quality of life – including being able to operate the television, speak through a computer and even open the blinds with the flick of an eyelid.
Naturally, all of that comes at a price, and while the concept has been refined here in Chelsea, the price tag still remains prohibitive.
That’s why Berman was excited when the New York family first came forward.
At first, he said they wanted to fund a facility in some other location in a different part of the country, having been familiar with the work done at LFCFL in Chelsea. Berman lent a hand to help them find a place, but eventually the family changed its focus.
“They soon came to realize that what they wanted to fund is what we have here,” he said. “The other places they were looking at were going to be nursing homes with an ALS wing and not what we have here. They understood it’s extremely financially challenging to open up a new ALS house.”
In the end, they decided to give the gift to LFCFL in order to open up a new house here, replacing a short-term rehabilitation facility already within the building.
“They gave a $5 million upfront gift and through the years they are going to help me raise the additional funds,” said Berman. “One thing they wanted was that we take a couple of New York people because that’s where the money came from and where they’re from.”
When the news was announced, Saling took to Facebook and was able to fill the new house in a matter of days – showing the extreme need for such facilities.
“It filled up with Steve Saling just putting the news on his Facebook page,” said Berman. “The calls kept rolling in and in until four days later the house was filled up. Then we had to start putting people on the waiting list again, unfortunately.”
The gift allowed the home to open, and the $12.5 million will allow it to operate for 20 years.
Berman said the gift has opened his eyes to the new possibility of the LFCFL being an exclusive ALS residential facility – being on the cutting edge of such care worldwide.
“My goal now is eventually to open up three or four more homes and that this building would be a center for excellence in ALS care,” he said. “The people who made the gift may be interested in working more with us and it would be an honor to develop another home with them.”
For Robbins, the gift and his new place of residence has given him something he could never have paid for – dignity.
“The biggest thing for me is not being a burden on my daughters’ lives,” he said. “I’m in a nice place and I”m not a burden on them. They can get on with their lives and know I’m in a great situation here. To be able to use the bathroom and use the toilet with the door closed or take a shower with hot water is something I couldn’t do. I can do that now. Those things give you your dignity back. I’m just very, very fortunate and happy.”
Mike Robbins, 60, of New York City is one of the newest residents
of Chelsea’s Leonard Florence Center for Living’s new McDonald ALS House. A group of benefactors recently gifted $5 million to LFCFL and a promise to raise $12.5 million over 20 years, allowing a new ALS home to be constructed and opened this month.
Ronda Winer shows off her Chanukah shirt during the Chanukah celebration at the Leonard Florence Center for Living on Sunday night, Dec. 6, the first night of the eight-day Jewish celebration. The LFCFL held a public celebration for the first time and drew a very nice crowd.
For some 10 years, using just his eyebrows, Leonard Florence Center For Living (LFCFL) resident Patrick O’Brien – who has ALS and cannot move anything but his eyebrows – worked away at creating what he hoped would be his greatest masterpiece on film.
A filmmaker before getting ALS, he was inclined to document the entire process of the disease’s progression, and did so quite well.
As the disease progressed, though, it became harder for him to work on the film. Several editors had helped him with the project, but nothing seemed to take the nearly-finished film from good to great.
Then, by coincidence, Documentarian Doug Pray entered the picture, and he and O’Brien formed a team that finally got the film out to the world.
And the world has loved it.
With O’Brien and Pray working together, ‘Transfatty Lives’ was born, and now the film is garnering awards from New York City to Milan. Earlier this year, O’Brien’s film won the Tribeca Film Festival in its category, and just this past Sunday it won the Audience Award at the Milano Film Festival in Italy.
“What a long, strange trip it’s been,” said O’Brien this week over e-mail. “The movie almost didn’t get finished. It was by luck that our composer, Bradford Reed, bumped into filmmaker Doug Pray one night at a party. Doug watched a rough cut of the movie and wrote a six-page letter to me about how to fix my movie, then titled ‘Everything will be okay.’”
His letter came just in time, O’Brien said.
“I had been trying to make the movie work for eight years at that point, and the film needed some fresh eyes,” said O’Brien. “I had been working with a writer and editor named Scott Crowningshield at that stage. It was good, the film, but not great. It had to be great. I had been documenting my life with ALS since the beginning, and it was going to be great. It just needed the right touch. Thank God for Doug Pray, who agreed to come on as a producer. It was good that Doug came onto the scene at that point in time, because by then I had experimented so much with my cokamayme ideas.”
Pray said in a telephone interview this week that he is incredibly honored to have worked with O’Brien.
“By the time I met Patrick, he had grown very frustrated and realized this had to be the last big push for his movie,” said Pray. “You can only keep reforming and editing movies for so long. I think we all felt that energy…The film did need help. It was beautiful, but needed help. It was like a wonderful painting that needs a frame. It was so powerful, funny, weird and artsy. No one was going to see if we didn’t make the push and take this on, and the potential for the film was enormous.”
Pray said O’Brien had gathered all of the footage – years of footage – and had compiled it for quite some time. The trick was to edit all of the raw footage into a great accounting of what O’Brien went through in his ALS journey – a journey that included lying motionless for several years in a Baltimore nursing home, only able to stare at the ceiling.
Once arriving at the LFCFL, the technology and enormous improvement in his quality of life at the facility’s ALS Green House, allowed him to continue his work and to be a key decision maker and director in the editing of his film.
Once again, O’Brien did that without the use of any of his body aside from the movement his eyebrows.
“As filmmakers, we are fussy with our own work, and I can’t imagine what it must have been like for Patrick to be locked in a bed in Boston, not able to move, while these other people all over the place are working on his film,” said Pray. “However, the degree to which he was able to give input and guide us and direct us about where he wanted the film to go is simply remarkable and amazing especially when you consider his situation. I’ll never forget this experience.”
Pray also said O’Brien’s story about winning Tribeca and Milan – and being able to travel to the Tribeca Festival for his premiere – is a feather in the cap for the LFCFL.
“It says a lot about the Leonard Florence that they allow people to be themselves and let people live lives that are meaningful – even when they’re paralyzed,” he said. “They supported this whole thing, even getting Patrick down to New York, which wasn’t easy. He couldn’t have done this without the technology available and support of that facility. He couldn’t have done this at a regular nursing home facility. That says a lot about Leonard Florence. It’s not normal; it’s special.”
The film is not yet available for public viewing due to the fact that it is still in the Film Festival circuit. It will be premiered in Los Angeles later this year, and will have a Boston premiere some time next year, O’Brien said. However, he said people can visit TransFattyLives.com for more information and to view a trailer.
The LFCL features neurological specialty residences with cutting-edge assistive technology, allowing individuals with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) and MS (multiple sclerosis) to receive skilled nursing care in a nurturing home environment. The 7th annual ALS & MS Walk for Living, a fundraiser to support these individuals as well as the innovative residences, will be held on Sunday, September 27, a
Filmmaker Patrick O’Brien – who has ALS and can only move one eyebrow – with Chelsea Jewish Foundation CEO Barry Berman last week at O’Brien’s home in the Leonard Florence Center for Living. This year’s ALS Walk for Living on Sunday will pay homage to several awards recently won by O’Brien for his film ‘TransFattyLives.’
t 165 Captains Row on Admirals Hill at 10 a.m.
This year Billy Costa of KISS 108 will act as emcee and kick-off the two-mile walk. Media sponsors include the Independent Newspaper Group; major corporate sponsors include Biogen, M&T Bank, AHOA, Kayem and Clifton Larson. Immediately following the walk, there will be a BBQ hosted by Chili’s, doughnuts provided by Dunkin Donuts, face painting, live dance performances, a petting zoo, a photo booth and a raffle. There is a $10 donation fee to participate in the Walk, which includes a Walk for Living tee shirt, the BBQ and all the activities. The Walk for Living is one of the few walks that are dog-friendly.