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.
Word spread quickly.
Excited residents and participants take off under the balloon arch at the beginning of last year’s LFCFL Walk for Living. This year’s walk will take place on Sunday, Sept. 25.
The Leonard Florence Center for Living (LFCL), the only urban model skilled nursing Green House in the world caring for individuals with ALS – was opening a second home for individuals living with ALS.
Within days, the new Dapper McDonald ALS Residence was filled with a diverse mix of residents in terms of ages, occupations and geographic locations. These residents, many of whom are completely immobilized, are now able to live more independently by controlling the lights, turning on the TV, opening doors and raising window shades – all through the use of their eyes.
The 8th Annual ALS & MS Walk for Living, a fundraiser to support these neurological specialty residences and its residents, will take place on Sunday, Sept. 25, 10 a.m. at 165 Captains Row on Admirals Hill. The Dapper McDonald ALS Residence marks the third neurological specialty residence within the award-winning Leonard Florence Center. The Steve Saling ALS Residence and the Slifka MS Residence opened in 2010. The revolutionary technology, dedicated support staff and nurturing home environment enable the residents to live as independently as possible.
“This year’s Walk for Living will honor Bill and Sharon Stein; major benefactors of our ALS Residences,” said Barry Berman, CEO of the Chelsea Jewish Foundation. “Their extreme generosity has changed the lives of our pALS.”
He added, “We also wish to thank our local communities, businesses, residents and their families. Clearly, their support of the Walk, year after year, is truly invaluable.”
Beloved radio personality Matt Siegel, host of “Matty in the Morning” on KISS 108 will once again act as emcee and kick-off the two-mile walk. Major corporate sponsors include Donoghue, Barrett & Singal, Lundgren Management (AHOA), M&T Bank, Kayem Foods Incorporated, ShiftGear, CliftonLarsonAllen LLP, A-1 Lighting Service Company, Genzyme and Eastern Salt.
Independent Newspaper Group is the media sponsor.
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. Registration begins at 9 a.m. on Sunday, September 25; the Walk begins at 10 a.m.
The Walk for Living is one of the few walks that are dog-friendly.
Without a doubt, the extraordinary ALS and MS residents reflect the very essence of the Walk – and the Center. Ten years after his ALS diagnosis, Patrick O’Brien, produced and directed TransFatty Lives, which won the coveted “Top Audience Award” at the prestigious Tribeca and Milano Film Festivals, among other honors. Steve Saling, an architect who helped design the Center, was told to he had two to five years to live at the time he was diagnosed with ALS in 2008; today Steve travels throughout the country, giving presentations and speeches through a voice activated computer. Bonnie Berthiaume, the first multiple sclerosis resident to move into the Leonard Florence Center, noted that the LFCL changed her life by giving her the freedom to attend Red Sox games, the theatre and weekly outings.
Tony Epifani, 47, a World Cup Soccer player from Syracuse, whose wife, son and daughter reside in New York, was confined to one room day after day, ultimately feeling lost and disconnected from the world. Now, after moving to the Dapper McDonald Residence, he is fully ensconced in the day-to-day activities at the Center. Together, these ALS & MS residents demonstrate how they live life to the very fullest every single day.
“I am excited to emcee the 8th annual ALS & MS Walk for Living,” said Matt Siegel. “The Leonard Florence Center for Living residents are an inspiration to us all, with their courage, determination, humor and zest for living.”
Support the ALS & MS Walk for Living by sponsoring or joining a team, or making a much-needed donation at www.walkforliving.org. For more information, call Joelle Smith at 617-409-8973 or email firstname.lastname@example.org.
Award-winning filmmaker Patrick O’Brien, a resident of the Leonard Florence Center for Living in Chelsea, will premiere his move ‘Transfatty Lives’ on April 3 at Revere Showcase Cinemas. O’Brien documents his life before, after and during his trials with the degenerative disease ALS.
Imagine creating an award-winning documentary just by moving your eyebrows.
Patrick O’Brien, who was diagnosed with ALS 10 years ago at age 30, spent 10 years producing the highly acclaimed ALS documentary “Transfatty Lives.” The film, which won the 2015 Audience Award at the Tribeca and Milano Film Festivals, will have its Boston premiere on April 3 at the Revere Showcase Cinema.
Patrick, who lives at the Leonard Florence Center for Living (LFCL) in Chelsea, is entirely immobilized and on a ventilator. He directed and produced ‘Transfatty Lives’ entirely by using his eyes to communicate through a special device attached to his computer. ‘Transfatty Lives’ takes one on an emotional roller coaster from Patrick’s wild, fun-loving days as a DJ and filmmaker into the dark heart of ALS. With the support of his friends and family, Patrick braves the unthinkable and turns his camera onto himself. He is able to capture all of the emotion, humor, and absurdity of real life – falling in love and fathering a child along the way.
‘Transfatty Lives,’ so named because of O’Brien’s love of donuts and other junk foods, depicts O’Brien’s personal reflections since his ALS diagnosis.
In Patrick’s words: “ALS is a fatal and incurable disease. I have chosen to do something with my illness. As you will see, I turned the camera on myself and began to document my journey with ALS. This challenge has given me a focal point for my energies, and will hopefully inspire others to keep moving through their own adversities.”
The Leonard Florence Center for Living, operated by the Chelsea Jewish Foundation, is the first urban model Green House in the country and the only fully vented ALS residence in the world. O’Brien moved into the LFCL soon after it opened in 2010, after living in a traditional nursing home that kept him confined to his bed – and his room – 24 hours a day. Today, in addition to producing films, O’Brien travels, attends concerts, sporting events and movies.
“We are so proud of Patrick and excited to show his remarkable film to the Boston community,” states Barry Berman, Chelsea Jewish Foundation CEO. “Patrick’s talent, passion and perseverance in the face of such a devastating disease is an inspiration to us all.”
The premiere will be held at the Revere Showcase Cinema, 565 Squire Rd in Revere at 10 a.m. on Sunday, April 3. Tickets are $20 per person and include the film, a Q&A with Patrick O’Brien and a reception following the premiere.
All proceeds benefit the Patrick O’Brien Foundation. To purchase tickets, go to www.reelboston.org. For more information, email Judy Mastrocola at email@example.com or call 617-887-0001.
Krista Rose has some fun with a mask and her daughter Annie, 1, who is delighted by the surprise. The fun was had at the Leonard Florence Center for Living’s Purim Party on Sunday.
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.
Last week, KISS 108’s Matt Siegel kicked off the 6th annual ALS & MS Walk for Living, which will be held Sept. 28 at the Leonard Florence Center on Admiral’s Hill in Chelsea. The Center features the first specialized ALS and MS residences in the country, enabling the residents to live active and independent lives. Siegel will emcee this year’s walk.
Also kicking off the walk with Siegel was Jack Geilfuss, the face behind this year’s walk. Jack was diagnosed with MS while in college and moved into the Leonard Florence Center shortly after it opened. Steve Saling, another resident, is an architect who helped design the Center when he was diagnosed with ALS eight years ago.
Aaron, Tamar, Meira, and Abraham Banks look into the 1953 Chevy “Bel Air” during the Antique Car Show at
the Leonard Florence Center for Living (LFCFL) on June 22 on Admiral’s Hill. The show featured classics such as the Bel Air, a
Ford Thunderbird and a 1956 Ford Parklane.