Walk for Life

Walk for Life

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.

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Graham Readies Another Great Walk for Living on Admiral’s Hill

Graham Readies Another Great Walk for Living on Admiral’s Hill

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.

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Matt Siegel to Emcee Eighth Annual ALS & MS Walk for Living

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.

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 walkforliving@chelseajewish.org.

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Leonard Florence Expands ALS Housing on $17.5 Million Gift

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.

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.

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Seventh Annual ALS & MS Walk for Living Set for Sept 27

Imagine being confined to one room for days, months, even years and then finding a home that enables you to regain your independence and, with it, your dignity. That home is the Leonard Florence Center for Living (LFCL), the first urban model Green House in the country.

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, at 165 Captains Row on Admirals Hill at 10 a.m.

For the second year in a row, Matt Siegel, host of the popular “Matty in the Morning” show on 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.

Bonnie Berthiaume was the first multiple sclerosis resident to move into the Leonard Florence Center for Living in 2010. The Center has, quite simply, changed her life.

“Since moving here, I have been able to participate in wonderful outings; we have gone to Red Sox games, movies and the theatre,” explains Bonnie. “I have even gone skydiving three times!” The Leonard Florence Center, sponsored by the Chelsea Jewish Foundation, consists of 10 homes, with 10 residents living in each home. The ALS and MS residents, many of whom are completely immobilized, are able to control the lights, turn on the TV, open doors and raise window shades – just by using their eyes.

Ten years after his ALS diagnosis, Patrick O’Brien, another LFCL resident, premiered his extraordinary film “TransFatty Lives” at the prestigious Tribeca Film Festival in New York City. Lauded by both critics and attendees, the film won the “Top Audience Award,” which is the highest possible honor and chosen by peers. Although Patrick needs round-the-clock ventilation, he lives an active and busy life at the Center. In addition to producing films, Patrick travels, attends concerts, sporting events, movies and premiers.

“I was officially diagnosed with ALS when I was 30 years old,” explains O’Brien. “It is a fatal and incurable disease yet I have chosen to do something with my illness. This challenge has given me a focal point for my energies, and will hopefully inspire others to keep moving through their own adversities.”

Over the years, the ALS & MS Walk for Living has become an integral part of the local community. This year’s walk is expected to attract over 1000 walkers. The event this year will also honor Everett High School teacher Susan Lomas, who has been involved in the Walk since the start and has been instrumental in getting so many of the Everett High School’s students involved throughout the years. Chelsea High School students and their families have also committed to turning out in full force for this event, as they have in the past.

“We are extremely grateful for the support of our local communities, businesses, residents and their families, and the many friends of the Chelsea Jewish Foundation,” said Barry Berman, CEO of the Chelsea Jewish Foundation. “The Walk for Living is crucial in helping our residents live richer and fuller lives.”

“It was such a wonderful experience last year getting to know these inspiring and courageous residents,” notes Matt Siegel. “I am thrilled to once again emcee this year’s ALS & MS Walk 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 or call Joelle Smith at 617-409-8973 or email walkforliving@chelseajewish.org. To view videos about the LFCL residents, please go to http://vimeo.com/24641660, http://vimeo.com/39457786

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