“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” Philippians 4: 8
Lesley Pacey, Founder/Director
Lesley Pacey has been a print journalist for Alabama newspapers and magazines since 1992.
An award-winning reporter, Pacey served as a correspondent for the Mobile Press-Register and for The Mississippi Press from 2000 through 2010. While a staff writer at the Press-Register from 1996 through 2000, Pacey covered multiple beats, but may be best known for a 10-part series of articles in 1999 chronicling the donation of her own bone marrow to help a 6-year-old boy with leukemia.
Ironically, Pacey’s middle daughter, Sarah, was diagnosed with the same type of leukemia five years later in 2004 at age 4. After Sarah’s diagnosis, Lesley Pacey noticed that several of her friends and neighbors also suffered from seemingly “rare” diseases, including five other children on the Eastern Shore of Mobile Bay with rare cancers. Two of those children had been in a playgroup with Sarah. Another two died.
Her concern grew into activism.
Lesley Pacey began gathering names of a growing number of Eastern Shore residents with rare blood and neurological cancers. After learning about another local group’s ongoing efforts to bring attention to a rash of Amytrophic Lateral Sclerosis cases on the Eastern Shore, Lesley Pacey also launched a database of people with ALS, known as Lou Gehrig’s disease. The rare neurological disorder in June 2008 claimed Lesley Pacey’s grandmother-in-law, Dorothy Pacey, who was nationally famous for her pralines, fudges and jam as founder of Punta Clara Candy Kitchen in Point Clear, Ala.
From 2005 through 2008, Lesley Pacey pleaded with state and federal public health agencies to study what she believed was an emerging disease cluster on the Eastern Shore. Using Lesley Pacey’s database, the Alabama Department of Public Health launched two rare cancer studies in Baldwin County – one in 2005 and another in 2008. ADPH shut down its latest study in November 2008, citing its own inability to conduct the investigation and concluding that certain rare cancer elevations had fallen within normal levels.
Even before Alabama public health officials ended their studies, Lesley Pacey was laying the groundwork for a nonprofit agency aimed at assessing the scope of and possible environmental causes of certain chronic diseases on the Eastern Shore. With her daughter off treatment and in remission, Lesley Pacey formed Eastern Shore Community Health Partners, Inc. in June 2008.
Lesley Pacey’s efforts have resulted in the state’s admission that Sarah was indeed part of a childhood cancer cluster in the Fairhope area. Her dedication also attracted interest from the University of Nebraska as well as two University of Arizona cancer cluster investigators who journeyed to the Eastern Shore in 2008 to research the area’s tree cores for environmental toxins. Lesley Pacey secured a $10,000 grant from the Sybil H. Smith Charitable Trust in Mobile to fund the Arizona research.
Since 2010, ESCHP formed three partnerships for disease cluster and environmental research with University of Alabama at Birmingham School of Public Health, Oxford University in England and the University of South Alabama.
In September 2012, Lesley and board member Debbie Quinn traveled to Washington D.C. to attend the National Conference on Disease Clusters. Lesley was a guest speaker at the conference that included some of the nation’s most passionate environmental justice crusaders. She and Quinn also lobbied our legislators on Capitol Hill to support legislation that would vastly improve our government’s response to communities with suspected disease clusters.
Lesley Pacey is passionate about finding the truth about why so many people on the Eastern Shore have suffered from rare diseases. Her nonprofit organization is a ministry of goodwill sparked by a reporter’s instincts, fueled by a mother’s love and piloted by a Christian’s faith.
“The Lord has told you what is good. He has told you what He wants from you: Do what is right to other people. Love being kind to others. And live humbly, trusting your God.” – Micah 6:8
Born and raised in South Florida, Lesley Pacey earned her bachelor’s degree in journalism from the University of Alabama at Tuscaloosa, where she graduated with honors. She and her husband Chris live in Point Clear, Ala. with their three children, Emma, Sarah and Thomas.
Linda M. Barnett, Board Member
Linda M. Barnett brings decades of healthcare experience and a heart for helping ALS patients to Eastern Shore Community Health Partners.
The retired respiratory therapist with 45 years experience in the field joined our organization in 2008 while serving as the facilitator for the ALS Foundation Support Group on the Eastern Shore.
“During my career, I had many patients with neuromuscular diseases often requiring long-term ventilation,” she said. “My entire adult life has been spent serving people. I am very aware of the increased numbers of neuromuscular diseases and rare cancers in our community. I serve willingly as a board member in the hope we will find the necessary answers to eradicate this problem in our community. We are all called to care for each other. Working with this foundation allows me to give back some of what this community has given me.”
Born in Laurel, Miss., Barnett was raised in Mobile and graduated from Davidson High School before attending Mississippi State College for Women in Columbus and receiving her training at University of South Alabama. She served as director of the respiratory therapy department at Thomas Hospital in Fairhope from 1972 through 1983.
Barnett also worked in the cardiopulmonary lab at Doctors Hospital in Mobile. Next, she entered the medical sales field with a local company and later for a national company, Lindcare, a subsidiary of Union Carbide. She later owned a cardiopulmonary business, Extended Respiratory Services, Inc., which was in partnership with Mercy Medical Specialized Hospital, providing continuing care and all in-house cardiopulmonary services for 20 years. ERSI and Mercy Medical worked together to develop a ventilator-weaning program that served as a medical model for Medicare and other third-party providers. Their specialty was serving patients needing complex medical management.
Barnett retired in 2005 and enjoys spending time with her family and serving her church. She attends St. Paul’s Episcopal Church in Daphne and is a Stephen Minister Leader. She and her husband Jerry, a retired insurance agent, have one daughter, Monica, who is a registered nurse. Monica and her husband Steve have three children, Leann, Chad and Will Henry. They also live in Fairhope.
Johnny Chaney, Board Member
A community organizer in Fairhope, Johnny Chaney joined Eastern Shore Community Health Partners as a founding board member is
“I got involved for the same reason I’m involved in ACT-II – out of my concern for the community and the health of the people,” he said.
Responding to a rash of rare cancers in his community, Chaney in 2008 combed Fairhope streets, knocking on doors and asking residents to fill out confidential health questionnaires.
Listening to the community’s concerns and organizing residents to create change is the crux of what Chaney does as a community organizer for Ecumenical Ministries in Fairhope.
The Barnwell, Ala. native has worked since 2005 for ACT-II, All Churches Together, which is a faith-based, Christ-centered organization that operates on principles of truth, respect and fairness to all races and classes. Together with more than 25 churches, ACT-II, which was developed by Baldwin County pastors in conjunction with Ecumenical Ministries Inc., works on a wide variety of problems communities face around the county. Their mission is to develop leaders and empower people to take democratic action to improve the quality of life in communities using a dialogue to action church-based models and principles.
“We strive to educate and combat unjust issues,” Chaney said.
Before working for Ecumenical Ministries, Chaney worked for 32 years at Scott Paper Company.
He graduated from Baldwin County Training School, served two years in the U.S. Army and attended Carver State College in Mobile.
He currently serves on the Macedonia Baptist Church board of directors. He also oversees the church’s food pantry and is a Sunday school teacher. In his spare time, he often visits the sick and prays for them.
“We do a lot of hospital visits,” he said. “We just like to comfort people, pray for them and let them know that they are not alone in their suffering.”
Chaney lives in Fairhope with his wife, Valarie. They have two children and several grandchildren.
Philip L. Cusa, Board Member
Philip L. Cusa, one of the founding board members of Eastern Shore Community Health Partners,is assistant hospital administrator at
Alta Pointe Health Systems, Inc.
He served as the 2011-2012 chairman of the board for the Eastern Shore Chamber of Commerce. He continues to serve as the Blue Print for Tomorrow Oversight Committee and on Governmental Affairs and Economic Development Committees, as well as the finance committee.
The former administrator of Thomas Hospital as well as vice president of Infirmary Health System Inc. serves on the Thomas Hospital Foundation Board and sereral other nonprofit boards. He is CEO of PLC & Associates, LLC, providing healthcare strategy and financial consulting.
Cusa, who has a bachelor’s degree in accounting and business from Florida Atlantic University, first joined Thomas Hospital in 1992 as its chief financial officer. He also is a fellow in the Healthcare Financial Management Association and past president of its state chapter.
The civic-minded Cusa also serves as vice chairman of Shared Services Healthcare Advisory Board. He also is a member of the comprehensive plan steering committee for the city of Fairhope, past treasurer and board member of the Eastern Shore Chamber of Commerce and a member of the advance division for Blueprint for Tomorrow, an initiative to develop a five-year strategic plan for the Eastern Shore.
Cusa also is an active member of the Fairhope Eastern Shore Kiwanis Club.
Jim Horner, Board Member
Known locally for heading up Fairhope’s Environmental Advisory Board, Jim Horner’s background is in engineering and sales
for various chemical companies.
The Montreal, Canada native earned his bachelor’s of science degree in industrial engineering from Clarkson College in Potsdam, New York. He later gained U.S. citizenship and joined the U.S. Navy.
After serving in the Navy for four years, he went to work for Scott Paper in Mobile, where he was an engineer for five years providing technical assistance on the S.D. Warren side of the mill.
Next, Horner worked for Monsanto in St. Louis, traveling throughout the U.S. as a paper specialist selling chemicals.
Four years later, he relocated with Monsanto to Wisconsin, where he sold paper chemicals for two years. With a desire to return to the south, Horner took a job with Air Products & Chemicals based in Allentown, Penn.
While with that company, Horner and his wife Sandy, a Robertsdale native, moved to Daphne in 1986 and then to Fairhope in 1989. Working from home, Jim Horner sold paper chemicals adhesives.
Jim Horner retired in 2001 after 23 years with Air Products & Chemicals and currently serves as chairman of the Fairhope Environmental Advisory Board, which advises Fairhope’s mayor and city council on environmental issues affecting the city. Jim Horner also is president of the Alabama Lighthouse Association.
Neurologist Dr. Nancy McLeod has been in private practice in Fairhope since 1990.
The Mobile native earned a bachelor’s degree in biology from the University of South Alabama (USA) in 1976.
She subsequently earned her medical degree from USA’s College of Medicine in 1980.
McLeod underwent her medical internship from 1980 to 1981 at the University of Tennessee at Chattanooga at Baroness Erlanger Hospital and performed her residency from 1984-1987 at USA Medical Center’s Department of Neurology.
From 1981 through 1984, McLeod was a partner in emergency medicine at Singing River Emergency Group, PA in Pascagoula, Miss. Her professional associations have included Mountain Empire Neurological Associates in Bristol, Tenn. from 1987 through 1989; and the USA College of Medicine, Department of Neurology, from 1989 through September 1992.
She worked with Eastern Shore Medical Specialists in Fairhope from May 1990 through 1994. She opened her own private practice on Fairhope Avenue in October 1994, moving in January 2003 to her current location at 358 Morphy Avenue, Fairhope.
McLeod is one of the founding board members of Eastern Shore Community Health Partners, initially joining the board out of concern for a growing number of glioblastoma multiforme (brain cancer) as well as neurological cases in Baldwin County in recent years.
Debbie Quinn, Board Member
Debbie Quinn took special interest in attention to rare cancers and neurological diseases on the Eastern Shore.
Following a series of news articles covering Pacey’s research, Quinn helped Pacey form Eastern Shore Community Health Partners, Inc. in June 2008.
With the best interest of her community at heart, Quinn helped Pacey obtain nonprofit status. She also assisted Pacey with writing and delivering grant requests, orchestrated meetings with federal lawmakers to request funding for environmental research, and welcomed and assisted University of Arizona researchers as they collected tree core samples during their June 2008 visit to Fairhope.
Quinn said she became involved because the news reports piqued not only her medical curiousity but also her governmental concern for all Fairhope citizens.
Quinn, who has served as a Fairhope city councilwoman from 1997 through 2012 and who has served as city council president, joined our board of directors in 2012
Board Member Ben Raines
Ben Raines in summer 2013 joined the Weeks Bay Foundation as the new Executive Director. Before his current post, Raines was known for his award-winning environmental reporting. Raines spent 13 years writing about the environment for the Mobile Press-Register and later served as the environmental chief for Alabama for AL.COM. Through his experiences and his love of the outdoors, Raines has developed a passion for conserving land in coastal Alabama. As an avid fisherman, he understands the importance of water quality and habitat not just for fish but for all wildlife. Most importantly, Raines recognizes that the quality of life we value in coastal Alabama is directly related to the quality of the environment we have around us. As a reporter, Raines covered Eastern Shore Community Health Partner’s efforts to mobilize ALS and rare cancer studies in the area. He brings a wealth of knowledge about our local environment to Eastern Shore Community Health Partners.
Miranda Schrubbe, Board Member
Miranda Schrubbe has a bachelor’s degree in public administration from the University of Mississippi and a master’s degree in social work from the University of Alabama.
Schrubbe worked in medical social work for about three years before staying at home to raise her three children.
The Birmingham native moved to Fairhope, Alabama in January 1997 after her husband, Dr. Ben Schrubbe, retired from the U.S. Navy, where he worked as a physician in several locations throughout the U.S. Dr. Ben Schrubbe is a family practice physician in Daphne, Alabama.
Schrubbe for several years has devoted her time to serving on the board of directors of the Fairhope Educational Enrichment Foundation, which raises and donates funds to Fairhope schools. She also is a founding board member of Eastern Shore Community Health Partners, Inc., for which she currently serves as the board’s secretary.
She is a breast cancer survivor.
Carol K. Stapleton, Board Member
The Bay Minette, Ala. native was pregnant with her daughter Ella Grace in 2005 when she was diagnosed with a meningioma.
Stapleton subsequently underwent a right frontal craniotomy at Semmes Murphy Methodist Hospital in Memphis, Tenn. to remove pressure from her optic nerve and to alleviate vision loss in her right eye.
Her daughter was born in 2005 and mother and child remain healthy today.
Stapleton earned her bachelor’s degree in nursing from University of Mobile in 1997. She will complete her master’s degree in nursing education at the University of South Alabama in May 2010. She has been employed at Radiation Therapy Oncology , P.C. in Fairhope since August 1997.
Stapleton lives in Loxley, Ala. with her husband and daughter.
Ricky Trione, Board Member
Ricky Trione has become beloved in recent years as Fairhope’s blind artist and was recognized in 2007 as his hometown’s “Good Will Ambassador” for spreading his message of hope wherever he goes.
The Fairhope native has crafted realistic pen and ink drawings for years. But after two freak but similar accidents stole his vision, one eye at a time, Trione launched an unlikely career as an artist and inspirational instructor at area schools and at workshops for the disabled and disadvantaged.
Trione, whose father died of the rare blood cancer multiple myeloma, contends he has been blessed by his blindness and the opportunities he has been given to offer a message of hope to others. He is one of the founding board members of Eastern Shore Community Health Partners.
“I try to put my favorite Scripture on the back of my paintings: 2 Corinthians 5:7, which reads, ‘Walk by faith and not by sight,’” he said. “God is so amazing. “There is no way else to explain it but the grace of God.”
Trione lost vision in his left eye in 1993 while serving as a captain in the Army. A logging truck slung an object through the open window of his vehicle. The next accident occurred in 2000 when Trione pulled his car over in Baldwin County to check under the hood of his car, and a passing truck slung a piece of tire tread that struck him in the other eye, causing permanent blindness.
Trione has worked with many respected Eastern Shore artists who have mentored, taught and inspired him to continue his love of art. Trione also shares his art with school children of all ages in Baldwin County Schools, offering hope, inspiration and the message of perseverance despite limitations.
The Fairhope City Council recognized Trione’s message of “overcoming obstacles despite diversity” by deeming him a good will ambassador to the city, proclaiming March 31, 2007 “as Ricky Trione Day.”
Trione since October 2011 was named executive director of the Exceptional Foundation’s Eastern Shore center for special-needs residents. The foundation offers year-round programs for physically and mentally challenged individuals. The foundation serves as a recreational, educational and social center for residents with Down syndrome, cerebral palsy, autism and other conditions.
Ricky Trione and his wife Bonnie have three children and several grandchildren.
Glenda Turner, Board Member
In 1999, Glenda Turner was heading a mortgage company in Chicago. Since then, the Fairhope woman has immersed herself in volunteer work.
She joined Eastern Shore Community Health Partners in 2008 after drawing up the organization’s articles of incorporation. She currently serves as the nonprofit organization’s treasurer.
“I think it is important to do as much volunteer work as I can,” she said.
Turner has worked with other volunteers on the annual benefit for Mercy Magic Program, which helps fund the pediatric outpatient program, providing continuing medical care for critically ill youngsters and childhood cancer patients after they leave the hospital.
While living in Chicago, Turner for two years headed the food pantry at her church, coordinating efforts between volunteers and families. The pantry was feeding nine families by the time Turner left in 1999 to move south.
But Turner’s passion has been helping homeless animals. She began that work while living in St. Louis from 1992 to 1995. She logged 20 hours a week at a St. Louis shelter, before moving to Chicago in 1995 and volunteering many hours to save animals there.
After moving to Fairhope in 1999, she began working with the Baldwin County Humane Society and she launched her own nonprofit organization dubbed Fairhope Cat Coalition. The group provides food and medical care for feral cats, making sure those animals are spayed and neutered. The cats are returned to locations where they were found, while younger kittens that can be tamed are groomed for adoption.
Born in Mansfield, La., and raised in Como, N.C., and Shreveport, La., Turner lived in Houston before moving to St. Louis and eventually Chicago. She moved to Fairhope when husband Jim was transferred to Chickasaw to head up the manufacturing division of the company for whom he worked.
Eastern Shore native Anna Wall’s interest in public health on the Eastern Shore began in 2005 when – out of a growing concern for a large number of friends and family who were experiencing rare diseases and disorders – she began collecting medical histories of Fairhope area residents.
In 2007, Wall, who resides in Lincoln, Neb., contacted Michael Shambaugh-Miller, Ph.D. Assistant Professor and Medical Geographer at the Department of Health Services Research and Administration in the College of Public Health at the University of Nebraska Medical Center. Miller – who works in rural health research, analysis and policy _ assisted Wall with data collection and mapping.
Wall also was instrumental in getting the Alabama Department of Public Health to launch its pilot cancer study in Baldwin County in January 2008.
In June 2007, Wall penned letters to Alabama and U.S. public health agencies as well as Alabama and federal lawmakers detailing her public health concerns. In the letters, she citied a litany of environmental issues plaguing the Mobile Bay area and requested studies on the occurrence and causes of public health problems on the Eastern Shore of Mobile Bay.
Her database included rare birth defects, Down syndrome, Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease), multiple sclerosis, Parkinson’s, adult and childhood cancers and unusual benign tumors. She also noted that the incidence of rare health issues appeared to be particularly high in the long-term residents and their children, and that the incidences of many of these disorders greatly exceeded national averages.
A native of Montrose, Ala., Wall’s efforts stem from a sincere love for a community that has been home to her family for more than five decades.
Wall attended Christ the King Catholic School in Daphne, Ala. from 1977-1985. She is a 1989 graduate of Fairhope High School. A 1994 graduate of the University of Alabama, Wall earned a bachelor’s of science degree in human environmental sciences with a major in nutrition. In 1995, she graduated from South Carolina’s Winthrop University dietetic internship program.
A resident of Lincoln, Neb., she is the mother of four children, including one child with Down syndrome.
Anna is chair of the Lincoln Down syndrome Association Medical Outreach Committee and is a member of Legatus International Catholic Organization.
Dr. Gregory Cotter, Board Liaison
Dr. Gregory Cotter is one of the nation’s top radiation oncologists, serving as the director of the American College of Radiation Oncology’s (ACRO) Practice Accreditation Program, writing that program’s standards and recently receiving a medal of achievement from that college.
The Mobile man also is renowned regionally for his role in making Mobile a leader in cancer treatment and research.
After he was recruited to serve as director of the University of South Alabama’s (USA) Division of Radiation Oncology in 1986, Cotter in the early 1990s sought approval from USA leadership to pursue a lifelong dream of creating a cancer research institute at USA.
That center eventually became the USA Mitchell Family Cancer Institute.
Dr. Cotter and Dr. Ken Ellingwood, medical partners for many years, expanded radiation oncology services in south Alabama. While Dr. Cotter was working at USA, Dr. Ellingwood was directing Providence Hospital’s radiation oncology division. The men built radiation therapy centers at Springhill Medical Center, where Dr. Ellingwood is based, and at Thomas Hospital in Fairhope, where Dr. Cotter has been since 2005.
Together, the doctors instituted many services in south Alabama such as high-dose-rate implants radiation therapy and stereotactic radiosurgery services.
Dr. Cotter also serves as an adjunct professor of radiation oncology at USA.
Dr. Cotter knows firsthand how devastating a cancer diagnosis can be. His wife, Ardice Tagert Cotter, was diagnosed in January 2004 with metastatic unknown primary cancer. She died in March 2005 at age 49, leaving behind three children.
The experience reaffirmed Dr. Cotter’s commitment to providing the best care possible for cancer patients.
Dr. Cotter studied physics, chemistry and biology at the University of Alabama in Tuscaloosa. He was accepted to medical school a year early, graduating as valedictorian when he earned his medical degree in 1980 from USA. He performed his internship at University of Alabama at Birmingham Hospital, completing his residency in radiation oncology at Washington University in St. Louis at Barnes Hospital. He practiced in Huntsville for two years before moving to his wife’s Mobile hometown 23 years ago.
When he isn’t at work, Dr. Cotter travels the globe doing accreditation reviews for ACRO, which has more than 270 centers that either are accredited or are in the process of achieving accreditation.