Health

Swampscott mother connecting hungry babies with donated formula

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Keiko Zoll singlehandedly launched a nationwide site to match those needing baby formula with donors. Photo: Steven A. Rosenberg/Journal Staff

By Shelley A. Sackett

SWAMPSCOTT — Until her mom, who lives in New Jersey, casually mentioned the nationwide baby formula shortage to Keiko Zoll, news of the crisis was not on her radar. While Zoll was aware of the Abbott formula recall in February, as the mother of a 9-year-old son she hadn’t given it a second thought. “Recalls happen all the time,” she told the Journal, “and I’m a bit removed from the early parenting space.”

Sitting in her car, the nonprofit communications professional tuned into a podcast, “The Baby Formula Crisis,” to learn more. What she heard left her shaken and sobbing in her Swampscott driveway.

Story after story of mothers going to desperate lengths just to feed their babies unleashed memories of what it was like for her when her son was born six weeks prematurely and she had to locate a specialty formula that was critical to his survival and hard to find. She couldn’t imagine what it would have been like to deal with the added stress of a nationwide shortage at the same time.

An interview with a mother ready to pay hundreds of dollars for a single can of formula was Zoll’s tipping point. “As a mother, as a human being, how could anyone not empathize with these women?” she said. “For me, knowing there are babies who may die if they don’t receive the formula they need to survive – it was just too much.”

She knew she had to do something. That night, after her work as director of communications for the Boston Schools Fund, she started building a website to connect families who need formula with those able to donate it.

Just before midnight on Friday, May 13, the Free Formula Exchange website went live. Zoll emailed 300 personal and professional contacts in her network announcing its launch. By the end of the first week, there were 10,000 requests and 1,000 donors from all over the country.

“While this platform doesn’t increase the supply of formula, it does leverage existing supply that most people don’t realize they have access to,” she said.

Zoll and her son in 2013. The baby was born six weeks premature.

Zoll said she was outraged and disgusted by reports of people price-gouging formula online. She emphasized that freeformula.exchange is 100 percent free. Users must create an account to access its database, but no money exchanges hands.

“It was important to me to design a solution that removed the marketplace from the transaction. Cost shouldn’t be a barrier to feeding children.”

Zoll is no stranger to rolling up her sleeves when it comes to helping others. She is a founding member of the Swampscott Antiracism Caucus and helped organize March Like a Mother for Black Lives in Boston in June, 2020, in the wake of the killings of George Floyd, Breonna Taylor, and Ahmaud Arbery. She has volunteered extensively for and served on the board of RESOLVE New England, a nonprofit supporting those struggling with infertility.

She is also a member of the Tzedek LaKol: Justice for All committee at Congregation Shirat Hayam in Swampscott, where she sits on the temple’s board of directors.

Zoll emphasizes that her experiences as a biracial woman have informed her activism throughout her adult life. “I know what it feels like to be unseen and unheard,” she said, referencing the bias, discrimination, and marginalization she has encountered

In addition, her personal values, which “exist at the intersection of Jewish belief and Japanese tradition,” have strongly influenced her volunteerism. She credits the Jewish emphasis on tikkun olam (repair the world) and the Japanese cultural belief known as wabi-sabi (an acceptance of the imperfection of life) as major guiding forces.

“My worldview settles into a comfortable space between these two beliefs: one that accepts our human flaws and also fights for just causes.”

Zoll knows firsthand how draining and overwhelming the onslaught of negative news can be. “It’s especially hard to be a parent in America right now. There are so few systemic supports and inequities abound,” she said.

She urges everyone who can to help out with the nationwide baby formula shortage, whether by scouring stores for formula to donate or simply providing a compassionate ear or shoulder or hug to support those parents who are totally stressed out.

“There are many ways we can all practice chesed (acts of loving-kindness) to our fellow humans in their time of need,” she said.

For more information and to request or donate formula, visit freeformulaexchange.com or follow @FormulaExchange on Twitter, Facebook, and Instagram.

Israeli researchers offer new hope for cancer survivors suffering from side effects of treatment

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Emil and and the author, Shelley A. Sackett, shortly before Emil’s death in 2019 at the age of 82. 

By Shelley A. Sackett

 

When Emil and Lili Berkovits moved to Boynton Beach, Florida, from Salem, Massachusetts, in 2014, they were excited to start their retirement after Emil’s long career as a cantor.

A fifth-generation hazzan who had emigrated from Czechoslovakia as a young child following World War II and grown up in Montreal, Berkovits spent most of his professional career in the United States.

He was a well-built, physically active man who played baseball professionally, but after an injury he gave it up for a career in musical and communal leadership. Berkovits helped bring generations of boys and girls to their bar and bat mitzvahs and made music that stirred the souls of many a congregant.

Decades later, after retiring to Florida, Berkovits, then 78, developed a persistent sore throat and noticed a lump on his neck. He soon was diagnosed with cancer of the oropharynx, near the back of his throat. Oropharyngeal cancer can be slow growing and, like many cancers, often spreads before any symptoms appear. By the time the cancer is detected it can be quite advanced.

The treatment was grueling. Over seven weeks, Berkovits received 35 radiation and seven chemotherapy treatments. He developed a heart infection and his throat became so inflamed that he couldn’t eat — both results of the radiation, doctors told him.

But the treatment was effective: For five years, well into his 80s, Berkovits lived cancer-free.

Yet he suffered dearly from the consequences of the treatment. He no longer could produce saliva, leaving his mouth permanently dry. He lost most of his ability to taste. He went on an exclusively liquid diet because regular food could cause him to choke. He lost 25 pounds, leaving him physically weak.

“Because he can’t eat normal food, he has no energy,” his wife, Lili, said earlier this year, shortly before Berkovits’ death over the summer. “Nothing can help these eating and swallowing issues.”

Berkovits’ experience was not unusual. Many cancer survivors find themselves struggling with health issues related to their treatment for years after they are declared cancer-free. Problems may include pain, fertility issues, infections, memory problems, sexual health issues, cognitive impairments and more, including increased risk of secondary cancers. For many, the health problems last a lifetime.

In Israel, a growing cadre of cancer researchers is focusing not just on cancer treatments but on improving life for cancer survivors by trying to mitigate treatment side effects.

“Quality of life is a subject of utmost importance as cancer patients go through therapy, and even once they complete their treatment,” said Dr. Mark Israel, national executive director of the Israel Cancer Research Fund, or ICRF. “It is not enough to cure cancer. We must also address the patients themselves and their experience.”

ICRF is now investing in research that aims to offset the debilitating side effects of cancer treatments that linger even after the disease is eradicated.

At the Rambam Health Care Campus in Haifa, its director of oncology, Dr. Irit Ben-Aharon, is studying how chemotherapy damages blood vessels, which can lead to vascular disease and fertility problems. By helping cancer patients avoid these toxic effects of their treatment, doctors can reduce their risk of developing cardiovascular disease or infertility in the future.

Ben-Aharon is hopeful her work will be of special benefit to younger cancer survivors.

“As the incidence of cancer in younger individuals is increasing, survivors with very long life expectancy are emerging as a group with significant challenges related to treatment,” she said.

Ben-Aharon’s work is one of four research projects currently funded by ICRF focused on improving the lives of cancer survivors. Two of the projects are being supported by grants provided through the Brause Family Initiative for Quality of Life at ICRF.

Since its founding in 1975, ICRF has raised more than $72 million for Israeli cancer research, including groundbreaking work that has led to both treatment breakthroughs and improved treatment outcomes.

While cancer treatments such as chemotherapy, radiation therapy to the brain and immunotherapy are crucial for curing cancer, they may leave the patient with cognitive deficits. Up to 75 percent of cancer survivors suffer cognitive impairments, including problems with attention, memory and learning.

Dr. Yafit Gilboa, an occupational therapist at The Hebrew University of Jerusalem’s Department of Medicine, is using her ICRF grant funded by the Brause Family Initiative to explore a novel approach to ameliorating that cognitive decline. This new approach, tele-rehabilitation, provides for the remote delivery of courses designed to diminish the cognitive effects of cancer therapy.

Gilboa’s strategy for treating patients with cancer-related cognitive impairment is comprised of 30-minute cognitive trainings several times a week using their home computer, supplemented by a weekly videoconference session with an occupational therapist.

Gilboa credits the Israel Cancer Research Fund for supporting not just research for cancer treatments, but also for treatment of side effects.

“This research makes a valuable difference in the quality of life for cancer survivors,” Gilboa said.

She and her team at The Hebrew University already have recruited patients from Hadassah Medical Center and completed a pilot study that showed encouraging results in cognitive and occupational performance. Patients also reported decreased depression and anxiety and an increased sense of well-being.

“One patient reported that since starting this therapy, he was striving to live the way he did before he got sick. Another said she felt more self-confident,” Gilboa reported.

Dr. Jacob Hanna of the Department of Molecular Genetics at the Weizmann Institute of Science in Rehovot is focused on pluripotent stem cells, which are like the cells from which babies are formed in that they have the ability to become any type of organ or tissue. Hanna and his team are studying how cells with the properties of embryonic stem cells can be generated from a patient’s skin or hair follicles and then used to create an array of cell types for transplantation into cancer patients. This could be instrumental in helping cancer survivors whose treatment regimen destroyed tissue or damaged organs.

Dr. Avi Priel of The Hebrew University’s School of Pharmacy is working on the problem of chronic pain among cancer survivors. While opioids are the most powerful tools for managing pain, they can have debilitating side effects and may be addictive for those requiring chronic relief.

“In the last two decades, the misuse of opioids — powerful but problematic drugs — has shed light on the need for new, less addictive painkillers with fewer side effects,” Priel said. “This is precisely my lab’s research goal.”

Priel’s research team, another recipient of a grant provided through the Brause Family Initiative, is working to develop novel analgesics — painkillers — that will have a potency similar to opioids but with minimal side effects. The team is also investigating drugs that can be combined with opioids to reduce the frequency and amount of opioid required to achieve good pain control.

“We believe these will enable patients who suffer from cancer pain to enjoy a better quality of life,” Priel said.

Swampscott seniors stretch their minds and bodies at weekly Tai Chi and Sound Meditation classes

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Benson and Snow

John Benson receives an adjustment from Nicor Snow (also known as Kāmpa Vāshi Déva).

Shelley A. Sackett

Since 2014, John Benson has travelled from his Nahant home to the Swampscott Senior Center every Tuesday to practice Tai Chi with Nicanor Snow. For Benson, who was a professional copy editor for an academic journal specializing in Asian and Western religion and philosophy, having the subjects he learned about all these years fuse in a single physical and mental practice is “quite satisfying.”

“When you feel the breathing and the movement coming together, then you know you’ve reached that special zone where you want to be,” he said. He practices with Snow twice a week, also attending his class at the Marblehead Council on Aging.

Petersen and Snow2

Paula Peterson credits Tai Chi with helping her to “slow down.”

Bonnie Harmon and Paula Peterson have also practiced twice a week for four years with Snow, known too by his spiritual name, Kāmpa Vāshi Déva. Tai chi has changed them both. “We’re always running around. With Tai Chi, you have to calm down and go slow and think. It’s very refreshing,” Peterson said.

Harmon thinks the biggest change she’s noticed in herself is that she is more peaceful. “When I concentrate, my body gets tight. Tai Chi makes me relax my body,” she said.

Snow describes Tai Chi as “meditation in motion”, a practice that helps regulate the body and increase serenity. “Tai Chi is great for balance, posture and other health benefits. It is perfect for adults and seniors who really have the time to give it,” he said.

The class meets every Tuesday at 1 p.m. at the Swampscott Senior Center at 200R Essex Street. Walk-ins are welcome. The fee is $5.00.

Snow teaches 16 Tai Chi classes a week at different community senior centers in Swampscott, Marblehead, Lynn, Boxford, Lynnfield, West Newbury and Newburyport. His classroom is multi-level, with newer and more experienced students grouped together at different ends of the room. “Everyone learns the same way. They start at the beginning of the classical form, practice it, and after they’ve mastered it, they move on to the next step,” he said.

Snow’s niche teaching at senior centers fell into his lap. Marilyn Hurwitz, director of the Swampscott Council on Aging, saw his Tai Chi Institute mentioned on the back of a Boston Globe magazine, explaining the benefits of Tai Chi. She called Snow to see if he would teach in Swampscott. Other senior centers followed suit and before long, he was up to 16 classes a week.

Born in the Philippines, Snow’s family moved to the U.S. when he was a toddler. He discovered Tai Chi as a 22-year-old, after becoming “burned out” by his many years practicing Okinawan Karate. “I needed a change in my life. I read about Qigong and Chinese energy work in the back of a Kung Fu magazine and I wondered, ‘Where do I find that? How can I get involved?”

He found a Tai Chi school in Boston and in the spring of 1983 he started training with Master Gin Soon Chu and his son. Two years later, he began his healing studies at the Lea Tam Acupuncture Center in Boston with Qigong Master Tom Tam and Dr. Ping C. Chan.

In 2000, Snow established the Seacoast Tai-Chi Club in Kittery, Maine, which he renamed the Seacoast Tai-Institute when he moved to Portsmouth, N.H. He is an instructor and trainer of Tai-Chi Chuan, Qigong healing and meditation and certified by the American Organization of Bodywork Therapy of Asia.

In addition to Tai Chi, Snow is offering “Sound Vibration Meditation” on Tuesdays at 2 p.m., right after Tai Chi. The class explores kirtan, or Hindu cultural singing, combined with light stretching and breathing exercises. The fee is by voluntary donation.

“Kirtan brings peace to the world in body, mind and soul. When you’re chanting these mantras (a word or sound repeated to aid concentration in meditation), there is a spiritual connection that happens through sound vibration,” said Snow, who brings his harmonium to accompany the chanters. “There is a healing aspect to the vibrations.”

Dennis Scolamiero and his daughter, both of Swampscott, attended both the first Sound Meditation and will be back. “It’s very moving. I’m proud to have evolved in the ways that support this,” Dennis said. “He loves to sing,” his daughter added. “It’s a great activity that we can do together.”

To those who have never tried Tai Chi, Snow offers this advice. “You have to have a lot of patience and give it a try for longer than you think. I try to coach people so they can feel the practice. You have to really feel the external movements to develop an understanding of what it feels like on the inside,” he said.

Harmon and Snow

Bonnie Harmon has been practicingTai Chi twice a week for four years.

Harmon, who hasn’t yet mastered the first form despite her four years of twice a week classes, agrees with the need to be patient. Asked if it is worth it, she replied with a huge smile, “We love him (Snow). That’s why we come.”

 

 

 

 

 

 

 

 

New app gives hope to caregivers of loved ones with Alzheimer’s disease

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By Shelley A. Sackett

PR-Alix-Segil-OnLeftSide-and-Debby-Segil-Smiling-Holding-App-2-1024x591

Alix Segil and Debby Segil

 

Debby Segil was home in bed with the flu. Rather than using the time to pamper herself with comfort food and old movies, the 89-year-old pint-sized dynamo seized the opportunity to do what she loves best: helping others.

As a licensed independent clinical social worker with 40 years of experience, Segil is used to thinking about ways to support those in need. On this particular wintry day two years ago, her thoughts turned to home caregivers of loved ones with Alzheimer’s disease or dementia.

“No one has taught them dementia’s ABCs, so they make lots of mistakes,” she said. “They still think they can explain things. They think they can reason with someone.”
A member of Temple Emanu-El since 1965, Segil feels she is carrying on her mother’s legacy of caring. “She always cared about welcoming newcomers in the Jewish community in Hazelton, Pennsylvania, where I grew up,” she said.

Segil knows what a difficult and lonely job it is to care for someone with dementia, especially at first. As program manager of the Family Caregiver Support Program at Greater Lynn Senior Services (GLSS) since its inception 15 years ago, she has had caregivers tell her over and over again, “This is such a difficult job. I don’t know if I can do it.”

So she decided to write a poem that could give these family caregivers something to prepare them from the beginning by helping them relearn how to interact with their loved one so they could both get along.

Knowing that a pneumonic device helps people of all ages learn and retain new information, Segil distilled her advice to a mantra of five words – distract, divert, and then agree – which became the refrain in her five-stanza poem.

Once she finished the poem, Segil thought, “Wouldn’t it be better if we could set it to music?” So she contacted her friend, Rick Goldin, who writes and sings children’s songs. “I thought he would be perfect because he would write a nice, easy tune,” she said.

Goldin made a recording of their “Caregiver Ballad” and Segil brought it to some people at GLSS. They loved the song and suggested developing an app that would provide a toolset for dementia caregivers with the ballad as its anchor.

A development team was created to shepherd the project from concept to Caregivers Matter, a free app. Team members Katherine Prouty, product manager, and Larry Ehrhardt, application developer, are both Marblehead residents.

So is Alix Segil, Debby’s 18-year-old granddaughter who helped with the website caregiversmatter.org as her Marblehead High School senior project. Although the two live in the same household, their lives rarely intersected in the “real world” until Debby suggested that assisting in creating the app was a perfect way for Alix to combine her technology savvy and love of helping people with the requirements of her senior project.

Working with her grandmother was a real eye-opener for Alix, who will soon be a freshman at Ursinus College in Pennsylvania. “I know she’s a hard worker because she’s always working at home,” she said of her grandmother. “Seeing her in the office, running around all day going to meetings, I realized she has a really long day. Like, every day.”

Like her grandmother, Alix credits her Jewish upcoming with instilling in her a sense of tikkun olam. “Being Jewish, I’ve learned you’ll always have a community to go to. The app helps make sure caregivers don’t feel alone in what can be a lonely job,” she said.

Released in June, the free app currently works on Apple and Android systems, with Kindle on the wish list. Its menu revolves around the ballad and a toolset Segil developed for GLSS with the help of a grant from the Massachusetts Office of Elder Affairs.

Pep talks, activities, and tips for getting through the day are on the app’s tabs, as well as a link where caregivers can learn more about dementia and also share their ideas and feedback.

“People need to know that they are not alone, that there are ways to make the caring easier,” Segil said. The app helps them remember the importance of also caring for themselves by relaxing, refocusing, and regrouping.

The app has received positive feedback, including from a friend of Segil’s whose husband passed away from dementia 10 years ago. “She told me that at that time, she had no confidence that anything could be better or that she could do anything differently,” Segil said. “She said this app would have been so meaningful to her because it gives hope.”

For more information, visit caregiversmatter.org.

Two-day SSU symposium trains clinicians in addiction diagnosis and treatment

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David Selden, a clinical social worker and therapist, has been involved with the management and provision of behavioral health services for over 35 years as a clinician, administrator, executive level manager and consultant.

 

He is the Director of Leahy Health System’s Cape Ann Adult Behavioral Learning Center in Salem and teaches part-time at Salem State University in the Psychology Department.

 

He also has a private practice with a specialty in working with teens, adults and their families who are experiencing difficulties from substance use and related mood disorders. He holds both ACSW and LICSW degrees and has lived on the North Shore for over 30 years.

 

In other words, he is no stranger to mental health and addiction issues on the North Shore. And Selden is worried.

 

“50-60% of our clients have substance use and addictive issues. We are primarily a mental health and not a specialty substance use treatment facility. This is typical for most mental health facilities, and why it is so important the staff are cross-trained in both the mental health and addiction treatments,” he said.

 

Although more and more clients with substance abuse and addiction disorders seek help initially from psychotherapists, local graduate schools do not include this topic in their curricula, he explained.

 

“Local programs are graduating new clinicians who become therapists, case managers, program directors and supervisors with no education or experience in this specialty. This is resulting in misdiagnoses, inadequate treatment and programs unprepared to provide necessary services,” the Marblehead resident said.

 

To rectify this deficiency, he has been working with administrators at Salem State University to develop training programs and curricula that may lead toward a specialty graduate program in the area of substance abuse and addiction. That long-range project has the support of local agency executives, who see a major need for this type of workforce training.

 

In the meantime, however, he is focused on the more immediate need to fill the gaping hole in practicing clinicians’ and graduate students’ training. To that end, he has spearheaded and organized a two-day symposium titled, “Substance Use and Addictive Disorders: Energizing the Community to Fight Back.”

 

The intensive and highly interactive conference will integrate elements of best practice treatment models, case studies and virtual team practice sessions. The two-day workshop runs Friday, June 16 and Saturday, June 17 from 8:30 am – 4:30 pm with 12 CEUs available for professionals who attend both days.

 

Selden worked with Dr. Carol Bonner, Associate Dean of SSU School of Social Work and Dr. Jeanne Corcoran, Interim Dean of the College and Health and Human Services. The symposium is supported by the School of Social Work and will take place at SSU’s Ellison Campus Center.

 

Between 2000 and 2016, opioid-related deaths have dramatically increased in Massachusetts, according to The Official Website of the Executive Office of Health and Human Services. For example, total statewide deaths increased by more than five-fold, from 379 to 2,069.

 

Essex county increased from 51 to 281 deaths; Salem from 5 to 19 deaths; Gloucester from 2 to 9 deaths; Swampscott from 0 to 4 deaths; and Marblehead from 3 to 4 deaths. (For more information, visit

mass.gov/eohhs/gov/departments/dph/stop-addiction/current-statistics.html.)

 

Selden thinks the symposium is both well timed and relevant.

 

Allison Bauer, who holds degrees in law and social work and is the Director of the Massachusetts Department of Public Health’s Bureau of Substance Abuse Services, will open the Friday, June 16 with a keynote address.

 

The rest of the day is devoted to topics in two areas: basic clinical (“What is Addiction?”; “Assessment and Diagnosis”; “Stages of Change/Motivational Enhancement Therapy”) and supervision/management (“State of the Treatment System”; “Self-Help 101”; “Alternative Programming”).

 

Day Two deals with treatment, post-recovery and relapse issues. Participants will spend the afternoon in virtual treatment teams that will be assigned case studies for practice in assessment and treatment planning.

 

Selden has assembled a stellar panel with a variety of degrees and professions, from business executives to educators to nurses and treatment program specialists. He has promoted the symposium through e-mail, social media and word of mouth via various professional networks.

 

Colleague feedback has been “overwhelmingly positive. Everyone I speak to agrees this is a much-needed program. The faculty all readily stepped up to volunteer their time for the symposium,” he said.

 

With the opioid addiction crisis and its human toll frequently at the forefront of local, state and national news, Selden stresses that the symposium is neither limited to nor geared exclusively for professionals in addiction treatment or related fields.

 

“The audience is anyone interested in working with people with substance use and addictive disorders,” he said, including those whose friends or loved ones may be so afflicted.

 

To register, go to substanceabuse17.eventbrite.com.

RESCUES Manual for Commercial Fishing Industry Unveiled

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Compilation of best practices for fishermen, families and communities

By Shelley A. Sackett

 

 

 

Over fifty people packed the standing room only Gloucester Coast Guard Station last Thursday for the unveiling of RESCUES, the long awaited first-ever comprehensive guidebook on dealing with a crisis in a fishing community.

 

“This is an exciting day, but it is also a sad day,” said Angela Sanfilippo, the President of both the Gloucester’s Wives Association and the Massachusetts Fishermen’s Partnership, who also served as master of ceremonies. As a fisherman’s daughter, wife and mother, she has first hand experience of the pain and trauma suffered by families and communities when a fisherman is lost at sea.

 

She told the story of the night of the 1992 “perfect storm” when she and many others slept at the Gloucester Coast Guard Station. “The captain said, ‘We need to start training fishermen in how to save themselves,’” she recalled. That planted the seed that would eventually grow into the RESCUES manual.

Mayor and Sanfilippo

Gloucester Mayor Sefatia Romeo Theken addresses the group as Angela Sanfilippo looks on.

 

The acronym stands for Responding to Emergencies at Sea and to Communities Under Extreme Stress.

 

“We all get numb to the dangers of the fishing industry, but there are widow’s walks and porches named for families who paced, hoping their men would come home,” said J.J. Bartlett, President of Fishing Partnership Support Services. He said that if public school teachers died at the same rate as fishermen on the job, over 400 teachers would die of work-related injuries each year.

 

“The idea is that, when a crisis occurs, folks in our fishing ports will be able to consult this manual and know right away how the Coast Guard and other authorities are responding, and where to turn for reliable help and support,” Barlett added.

 

Gloucester Mayor Sefatia Romeo Theken spoke of her own family tragedies over fishing accidents and their aftermath. “You can take the fisherman out of the ocean but you can’t take the ocean out of the fisherman,” she said. “We’re fortunate in Gloucester because we have a team in place to put this kind of book together so now you know where to go” for help, she added, noting that although there is no safety book that will prevent loss of life at sea, “this book can help.”

 

The Mayor praised the Coast Guard. “They risk their lives for the sake of the fishermen,” she said. Captain Robert Lepere, commanding officer of the Gloucester Coast Guard Station for the past three years, returned the compliment. “I’ve been in the Coast Guard for 20 years, and never have I seen a community pull together like this,” he said. Captain Claudia C. Geltzer, commanding officer of the Boston Coast Guard Station and Captain of the Port of Boston, praised RESCUES as a very important milestone. “This manual will make any fisherman who reads it better prepared at sea,” she said. “In the heat of a crisis, we all revert back to our training.”

Hall-Arber and Sanfilippo

Madeline Hall-Arber

 

Madeline Hall-Arber, an anthropologist at the Sea Grant College program at the Massachusetts Institute of Technology, and Ann Backus, of the Harvard University School of Public Health, were the principal investigators on the lengthy project that produced RESCUES. They interviewed fishing community leaders, Coast Guard personnel, fishing vessel safety trainers, clergy, social service agencies, fishermen and their families, business owners, insurance companies and attorneys. Kristina Pinto of the Fishing Partnership Support Services is the third co-author.

 

Hall-Arber described how she first became interested in undertaking the RESCUES project. “I met a fisherman who didn’t know how to swim. ‘Why prolong the agony?’” he asked. She remembered thinking it might be an interesting research project to find out what fishing industry standard best practices were before an accident, at sea and if disaster occurred. “People in the industry were astoundingly enthusiastic,” she said.

 

The RESCUES manual focuses on what interviewees shared as being critical to know before, during and after an incident. It contains a wealth of material, including contacts for services in Gloucester and New Bedford.

 

Its five main sections focus on essential information to help prepare individuals, groups and entire communities for a crisis affecting members of the commercial fishing industry, such as the sinking of a boat or the search for crew members lost overboard at sea.

I wanted people to be able to skim the manual, get useful information, and then go back,” Hall-Arber said.

 

For example, chapter 1, “Integrative Preparedness” (before leaving the dock) includes an easy-to-follow checklist of essential safety training and communication plans for the vessel owner, crew and families. “Emergency” explains what the Coast Guard does during an emergency and outlines communication chains of command. “The Aftermath” and “Longer-Term Outreach and Counseling” addresses situations after a loss is confirmed. Appendices incorporate maintenance checklists, Coast Guard contact information, community crisis support organizations and useful websites.

 

One of the surprising facts Hall-Arber learned was that many family members didn’t know which boat their loved one was on or what kind of fishing he might be doing that day. Backus, whose expertise is in occupational safety and health in the fishing industry, likewise discovered that vessel captains usually didn’t know about crewmembers’ medical histories or their contact information. She and Sanfilippo have since developed and distributed scores of refrigerator magnets for fishermen’s families to keep handy with information that the Coast Guard would need in an emergency. “Families should know where important documents are,” Backus said.

 

Paul Vitale, 43, a fisherman who has lived in Gloucester his whole life, thinks some of these common sense suggestions will be extremely helpful. “Lots of time people don’t know which boat they’ll be on. Not everyone owns their own boat,” he explained.

 

Fishermens wives Statue

 

Sanfilippo, who was instrumental in bringing to fruition the decades-long dream of Gloucester Fishermen’s Wives Association to create a Fishermen’s Wives Memorial, is equally determined to bring RESCUES beyond Boston, the South Shore and Cape Cod. “We will be bringing this up and down the entire coastline. Today we open that road,” she said to resounding applause.

 

 

 

Funding Cancer Research: ACS Fights the Good Fight

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Above: Aaron Goldman, Ph.D., American Cancer Society pay-if grantee.

By Shelley A. Sackett

This year, 1.6 million Americans will receive a new cancer diagnosis. Yet, federal funding for cancer research is at its lowest ebb in decades, according to American Society of Clinical Oncology (ASCO).

“It’s scary what we’re doing nationally with funding,” said Tom Flanagan, Interim Senior Director of the New England Division of the American Cancer Society (ACS).

Tom Flanagan

Tom Flanagan

In 2014, cancer caused 585,720 deaths in the United States, or one fourth of all reported deaths. According to the ACS, the number of new cancer cases is expected to rise by almost forty percent by 2030. Yet, federal funding of medical research has remained flat for more than a decade when adjusted for inflation.

The U.S.’s National Institute of Health (NIH) is the largest source of funding for medical research in the world. Since 2003, however, its inflation-adjusted appropriation is down 23 percent, according to the ASCO. The NIH budget peaked in fiscal year 2010 at $30.9 billion, falling to $30.3 billion for fiscal year 2015.

Diminished resources have had immediate effects. For example, patient enrollment in NIH’s clinical trials network decreased from 29,000 patients in 2009 to 20,000 in 2013. Clinical trials are a critical step in bringing potential new therapies to the marketplace.

Next to the federal government, the ACS is the largest private funder of cancer research, subsidizing 809 research grants in the U.S. worth $438 million in 2015. Of that national total, $47.5 million, or over ten percent, is earmarked to fund 96 Massachusetts grants.

In addition, the ACS’s multi-disciplinary review panel sometimes approves applications that are beyond that year’s funding resources. Called “pay-if” grants, individual donors who wish to support research that would not otherwise be funded subsidize the work. In 2014, these individual donors stepped up to contribute more than $8.8 million in funding, financing 46 additional “pay-if” grants.

One pay-if grantee is Aaron Goldman, Ph.D., an instructor of medicine at Harvard Medical School who was a fellow with ACS for three years, until this past July. He received a $150,000 research grant to study the biological mechanism that makes some breast cancer cells resistant to cancer therapy. His goal was to develop a drug that would attack this mechanism.

“The focus of our work is not just to keep testing and playing with pathways and molecules, but to really make something come to fruition. There is a huge unmet need, particularly when it comes to cancer cells’ resistance to chemotherapy,” he said. In fact, he and his team have developed drugs that they know are working. “We got a lot of great research accomplished in just three years,” he said proudly.

Goldman and his team are currently seeking private funding to expand these drugs into a full-fledged company so they can study and license them. With the right funding, these new therapies could be market-ready within a year-and-a-half, Goldman estimates, improving a cancer patient’s overall therapeutic outcome and preventing relapse.

Over the course of his 15-year involvement in cancer research, which started as an undergraduate and then graduate student at the University of Arizona, he has had a lot of experience with foundation and government grants. ACS is unique among funders.

“ACS brings you in as family. You’re interacting with the actual funders and the patient population. All the work I’m doing gets communicated throughout the community of administrators and the grant committee,” he said. By contrast, NIH is more anonymous and diffuse. “You feel a little more detached from the population that you’re trying to help – the people suffering from cancer.”

Goldman’s main takeaway from his experience with medical research and securing funding is that foundation grants are crucial in the current fiscal environment that has created even fiercer competition for federal grants, making it very difficult for a young investigator to even qualify for one.

“It’s the old paradigm of applying for a job without the experience but you need the job to get the experience. These foundation grants, like ACS, have been fantastic in filling those gaps,” he said.

ACS is trying to get Congress to refill NIH cancer research funding gaps by increasing appropriations. In 2001, it created ACS Cancer Action Network (ACS CAN) to amplify the organization’s work in the public policy arena. As the nation’s leading nonprofit, nonpartisan cancer advocacy organization, ACS CAN promotes its agenda of fighting cancer at the state and federal levels. ACS provides 92 percent of ACS CAN’s 2015’s budget of $35.9 million. The other 8 percent is donated by individuals, health systems and companies.

“We hold candidates as well as lawmakers accountable for their stance on public policies that we know will make a positive impact on fighting cancer,” said Shalini Vallabhan, ACS CAN Vice President of Government Relation in New England. With one million volunteers nationwide, trained volunteers in every congressional district and a lobbyist and grass roots manager in every state, the group is a political force to be reckoned with.

“We all know the level of partisanship that is taking place in Washington, D.C. Increasing funding for medical research is an area we see strong bipartisan support for,” Vallabhan said, pointing out that on July 15, the U.S. House of Representatives passed House Bill 6, “The 21st Century Cures Act” (congress.gov/bill/114-congress/house-bill/6) which provides for dedicated funding for NIH for the next five years at $1.75 million per year, or $8.75 million total.

The bill must next pass in the Senate before President Obama can sign it into law. Later this month, over 700 volunteers and ACS CAN staff will travel to Washington, D.C. to lobby lawmakers from all 435 congressional districts.

ACS would not receive any of this increased funding. “This is for the public good. We have to get the story out because it’s such an exciting time in life sciences and cancer treatment and if we continue to decrease funding from the federal government, it will have a ripple effect for decades in terms of research and science in these areas,” Vallabhan said.

Since its first cancer prevention study in the 1950’s linked smoking and lung cancer, ACS has funded long-term prospective studies on large groups of people to help researchers identify cancer risk factors. Currently, 300,000 people across the country are involved in a study that looks at lifestyle, medical history and changes in medical history, trying to uncover the next big link that can help in the fight to prevent cancer.

“We know that cancer will cost our economy over $200 billion in medical costs and lost productivity this year. We also know that 50 percent of cancer is preventable either through preventing tobacco use or ensuring good nutrition and proper physical activity, “Vallabhan said, pausing. “It’s common sense that it’s better both from a cost perspective and certainly in terms of impact on families and communities if we’re preventing the disease,” she added.

ACS CAN Outreach

June 2015 ACS CAN Research Breakfast, standing from left to right are: Shalini Vallabhan (Vice President of Government Relations, ACS CAN), Mike Ruggiero (Vice President of Government Relations, EMD Serono), Governor Baker, Paris Panayiotopoulos (President and Managing Director, EMD Serono), and Paul Guzzi (then - President, The Greater Boston Chamber of Commerce).

June 2015 ACS CAN Research Breakfast, standing from left to right are: Shalini Vallabhan (Vice President of Government Relations, ACS CAN), Mike Ruggiero (Vice President of Government Relations, EMD Serono), Governor Baker, Paris Panayiotopoulos (President and Managing Director, EMD Serono), and Paul Guzzi (then – President, The Greater Boston Chamber of Commerce).

Each year, the American Cancer Society Cancer Action Network brings together leaders from the life sciences ecosystem, health care systems, non-profit sector and businesses. The annual Research Breakfast highlights new breakthroughs in federal funding for cancer research and calls on policymakers to commit to increases in federal funding for the National Institute of Health and National Cancer Institute.

In June 2015, the 8th annual event featured Governor Charlie Baker, Mayor Marty Walsh and Paul Guzzi from the Boston Chamber of Commerce as guest speakers. More than 80 percent of federal funding for the NIH and NCI (National Cancer Institute) is spent on biomedical research projects at research facilities across the country. In FY 2015, researchers in Massachusetts received $2 billion in NIH funding, which supported more than 32,800 jobs across the state.

ACS CAN also launched the OneDegree project this year in partnership with Stand Up to Cancer to push for increased funding at the federal level. ASC CAN asks everyone to sign the petition at www.onedegreeproject.org. A two-minute video about the OneDegree campaign is at: facebook.com/video.php?v=10152839454796378&set=vb.6355071377&type=2&theater.

For more information or to donate to the American Cancer Society, visit http://www.cancer.org; for the American Cancer Society Cancer Action Network, visit www.acscan.org, and for the One Degree project, visit http://action.acscan.org/site/PageNavigator/OneDegree_Microsite_Petition_Page.html.