Advancing Discoveries on BPAN Disorder,
Parkinson’s / Alzheimer’s.

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Advancing Discoveries on BPAN Disorder,
Parkinson’s / Alzheimer’s.

Our Mission

ISA ELAINE FOUNDATION

The Isa Elaine Foundation is dedicated to advancing research discoveries on ultra-rare pediatric neurodegenerative diseases, specifically BPAN (Beta-Propeller Protein-Associated Neurodegeneration) caused by a mutation in the WDR45 gene. By characterizing early-onset BPAN in Isabella Elaine Lazzara, we aim to uncover insights that may unlock future treatments for major neurodegenerative diseases such as Parkinson’s and Alzheimer’s. With a safe effective treatment as our top priority, we are committed to sharing our findings openly with the neurodegenerative community and beyond.

Download the Isa Elaine Foundation Overview PDF

Our Impact

We believe in turning discovery into action. Alongside advancing research, the Isa Elaine Foundation supports families affected by NBIA disorders through transparency, shared knowledge, and clinical collaboration. In accordance with our founding principles, all proceeds from the foundation are directed to benefit Wolfson Children’s Hospital and Nemours Children’s Health—two of Jacksonville’s leading institutions providing compassionate care for children.

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Scientific Connection between BPAN and Parkinson’s / Alzheimer’s

Studies showing the similarities and differences between Parkinson’s and Alzheimer’s.

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Key points that make Isabella important to study

Isabella may be the youngest person diagnosed with BPAN and has the earliest comprehensive clinical data set collected.

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Researchers Assemble for a “Meeting of the Minds”

The Foundation will begin establishing collaborations for scientific/medical research and for clinical assessments.

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Isa Elaine Foundation’s Expert Leadership

Our dedicated team of Scientists and Advisors embark on a journey of breakthroughs in neurodegeneration research.

Isabella’s Story

ISABELLA ELAINE LAZZARA

Isabella Elaine Lazzara (ee-ss-a) was born on January 21, 2023, in Jacksonville Florida. The third of three Lazzara girls, Isa had a perfect bill of health for her first six months. In June, 2023, Isa’s parents noticed that Isa’s physical development was slightly behind their other daughters. This did not alarm the parents as their pediatrician was monitoring the situation. In August, physical therapy began in an effort to ensure that Isa stayed on schedule in terms of physical development.

The first time the couple discussed their concern about Isabella’s cognitive development was Wednesday, November 15, 2023. Two of America’s top pediatric hospitals reside in Jacksonville (Nemours Children’s Hospital and Wolfson Children’s Hospital), and they began working in collaboration. These two hospitals were incredible in their collaboration, expertise, and commitment to assisting her. Isa was seen by many of the clinical departments in these hospitals, and considerable BPAN characterizing data were collected.

A brain MRI was performed by Wolfson Children’s Hospital, one of only four advanced infant MRI machines in the world, showing thinning of the corpus callosum. On February 12, 2024, the Lazzaras learned that their daughter was diagnosed with a rare neurodegenerative gene mutation disorder called BPAN WDR45.

Dr. Marc Fariss, PhD, had recently moved to Jacksonville. He is a distinguished pathologist/toxicologist who has studied and published on protective strategies for neurodegenerative diseases. His career includes leading academic and private research groups with a focus on curing the most common degenerative brain diseases such as Parkinson’s and Alzheimer’s. He currently serves as President & Principal Toxicologist of ToxSynergy, LLC but has now turned his professional activities to understanding Isabella’s condition and to find successful therapies to give her and others like her the brightest future. He has identified numerous parallels between BPAN and the major neurodegenerative disorders, Alzheimer’s and Parkinson’s disease.

After learning about the similarities between early-onset BPAN and late-onset Alzheimer’s / Parkinson’s and how understanding his daughter’s clinical disorder might also lead to a cure for major neurodegenerative diseases, Chris and his team began to create a nonprofit foundation known as Isa Elaine Foundation.

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Key Points that Make Isabella Important to Study

Isa has undergone extensive clinical testing since infancy, including a brain MRI at Wolfson’s Children’s Hospital. These early data collections from multiple clinical departments offer valuable insights that can be extended for longitudinal studies (studying the same patient over time) on Isabella and her BPAN disorder.

While the parallels between BPAN and other neurodegenerative disorders have been previously suggested, no research studies have been identified that directly link the cause of the pediatric BPAN disorder to the end-of-life diseases such as Alzheimer’s and Parkinson’s.

Isabella may be the youngest person diagnosed with BPAN and has the earliest comprehensive clinical data set collected on this disorder to study over time. BPAN patients are reported to have a wide spectrum of symptoms and onset times, but Isabella is a unique BPAN patient with a variety of behavioral deficits, being diagnosed and studied so early in life.

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Scientific Connection between BPAN and Parkison’s / Alzheimer’s

BPAN is a gene mutation disorder that falls under a group of neurodegenerative diseases known as NBIA (Neurodegeneration with Brain Iron Accumulation). It is initially caused by a single mutation to the WDR45 gene which results in a functional loss in the protein, WIPI4. This single gene mutation is not inheritable but appears to occur spontaneously, making it an ultra-rare event.

The cellular processes that are critical for neurodegeneration observed with BPAN disorder are currently unknown. However, iron-induced oxidative damage and neuronal cell death as well as the inability of neuronal cells to eliminate damaged proteins and lipids through a process called autophagy appear to play an important role.

The specific disorder, BPAN was first identified in 2012 and it appears that BPAN is a very accelerated form of Parkinson’s / Alzheimer’s disease.


Questions / Answers

Q/A

Why describe BPAN Disorder as a very accelerated form of Parkinson’s / Alzheimer’s Disease?

Both BPAN disorder and Parkinson’s / Alzheimer’s disease are characterized by nearly identical clinical manifestations and pathological brain alterations.

  • Thinning of the corpus callosum.
  • Seizures.
  • Movement disorders and muscle weakness.
  • Loss of language and cognitive function, dementia.
  • Brain iron accumulation (substantia nigra, Parkinson’s disease; numerous brain regions, Alzheimer’s disease).
  • Neuronal oxidative damage leading to an accumulation of cellular debris such as damaged proteins and lipids in the brain.
  • Neuronal cell death (substantia nigra, Parkinson’s disease; numerous brain regions, Alzheimer’s disease).
  • Loss of neuronal myelin sheath in the brain.
  • Difference: Temporal expression of brain disease.
    • BPAN disorder patients exhibit these pathological alterations early in life; first decade, but most likely by the 1st year. However, most BPAN patients are not diagnosed with this disorder until later in their adolescent or early adult life.
    • Parkinson’s / Alzheimer’s disease patients exhibit these adverse changes late in life, predominantly after the 6th decade.

Q/A

How will studying Isabella’s case of BPAN lead to successful prevention and therapeutic strategies for Parkinson’s / Alzheimer’s disease?

  1. Critical cellular events that are responsible for Parkinson’s / Alzheimer’s disease (targets for therapeutic intervention).
  2. Critical cellular events that are responsible for BPAN disorder.

  • Critical cellular events that are responsible for Parkinson’s / Alzheimer’s disease (targets for therapeutic intervention).
    • After many years of research, scientists continue to find it difficult to distinguish pathological cellular events in the brain that are due to normal aging from those responsible for chronic, slow progressing Parkinson’s / Alzheimer’s disease.
    • When critical pathological events are identified, treatment in early adult life should be successful in preventing these deadly diseases.
  • Critical cellular events that are responsible for BPAN disorder.
    • Young BPAN patients, such as Isa Elaine, who have ongoing brain dysfunction, will be urgently studied over time to discover potential targets for therapeutic interventions.
    • Following Isa at such a young age permits the study of her disorder during its active phase, increasing our ability to identify critical events that are responsible for brain cell death.
    • Cells obtained from young patients (such as Isa) have a survival and functional advantage that permits more detailed studies for longer periods of time that are not possible in older adolescent patients. Therefore, it is urgent that we study cells obtained from tissue (cheek swabs) and blood from these young patients as soon as possible.
    • Cells derived from BPAN patients and from animals with the same single gene mutation as BPAN patients will be studied to learn the critical events that lead to neuronal cell death (targets for successful therapeutic interventions).
    • The critical pathological events identified in these studies will most likely also play an important role in causing Parkinson’s / Alzheimer’s disease.

Q/A

Who will provide leadership for the future direction of collaborative studies on BPAN disorder funded by the Isa Elaine Foundation?

  • Marc Fariss, PhD., Chief Scientific Advisor, Isa Elaine Foundation
  • Lenn Murrelle, MSPH, PhD., Scientific Advisor, Board of Directors, Isa Elaine Foundation

Both Drs. Fariss and Murrelle are experienced and accomplished biomedical scientists (see CVs) who have worked together collaboratively for over 20 years. They both have organized and participated in teams of expert scientists to solve challenging human health-related issues.

  • Dr. Fariss’ research on Parkinson’s disease has been funded by NIH and private foundations. The resulting findings were published on successful protective strategies for preventing iron-induced brain cell oxidative damage and cell death.
  • Dr. Murrelle has focused his research on understanding the causes, diagnosis, treatment, and prevention of numerous diseases. This research required Dr. Murrelle to build, lead, and contribute to scores of large, interdisciplinary teams of scientists and clinicians across the public, private, academic, and non-profit sectors.
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Researchers Assemble for a “Meeting of the Minds”

Isa Elaine Foundation proposes to study BPAN patients, like Isa Elaine (and her siblings as non-BPAN controls), in a manner that is novel and designed for rapid discoveries leading to successful treatments.

The Foundation will identify key BPAN-related scientific/medical topics for urgent study as well as several expert scientists in each of these topic areas who are dedicated to working collaboratively.

The Foundation will begin establishing collaborations for scientific/medical research and for clinical assessments by bringing leading experts together for a “meeting of the minds” for each of the topic areas listed below. The outcome of these meetings will establish priority research areas for funding to promote the rapid discovery of potential targets for therapeutic interventions.

  • Young BPAN patients, such as Isa Elaine, who has ongoing brain dysfunction, will be urgently studied over time to discover potential targets for successful therapeutic interventions.
  • Longitudinal clinical studies to characterize BPAN disorder changes in select patients (such as Isa Elaine) over time [for example: characterizing brain structural integrity, inflammation, and iron accumulation (MRI), specific genetic mutations, specific changes in proteins and lipids as well as standard clinical assessments].
  • Cell and animal studies to determine the mechanism of BPAN-related neuronal cell injury and death (providing targets for successful clinical therapy development).
  • Therapeutic strategies to determine which potential clinical treatments are most likely to be successful and should be pursued now (for example: gene- and protein-replacement therapy, stem cell therapy, and/or small molecule therapy, and/or antioxidant and anti-inflammatory therapy; all delivered to the brain).

Leadership

Marc Fariss, PhD

CHIEF SCIENTIFIC ADVISOR

Dr. Fariss is an accomplished pathologist / toxicologist focusing on neurodegenerative diseases and therapeutic strategies to prevent oxidative stress-induced cell death. He has redirected his extensive biomedical research experience toward understanding Isa’s condition and advancing our mission.

Marc Fariss, Ph.D. is an accomplished researcher and expert in the field of toxicology. He has over 40 years of experience solving complex and challenging pathological and toxicological questions related to determining the critical cellular events that are responsible for human diseases and developing therapeutic strategies. These disorders include neurodegenerative diseases, anticancer therapy, liver diseases and drug- and chemical-induced toxicity.

Lenn Murrelle, MSPH, PhD

BOARD MEMBER, SCIENTIFIC ADVISOR

Dr. Murrelle is an expert in epidemiology, psychometrics, and biostatistics, specializing in psychiatric and genetic epidemiology. His biomedical expertise and successful experience in building and leading interdisciplinary teams of scientists and clinicians guide our research initiatives.

Dr. Lenn Murrelle brings nearly 40 years of global experience in epidemiologic research, focusing on disease prevention, pharmacoepidemiology, drug development, and biomarker discovery. As the founding President and CEO of Venebio Group, LLC, a life sciences research consultancy, he now serves as a retired Senior Advisor to the company.

Previously, Lenn was a Director in Worldwide Epidemiology at GlaxoSmithKline Pharmaceuticals (GSK), where he led research projects for genetic and molecular epidemiology, target identification, and safety pharmacogenomics. After GSK, he spearheaded biomarker discovery studies through industry-academic-biotechnology collaborations focused on tobacco harm reduction, intellectual property development, and patent prosecution. He has also served as an expert witness in major litigation for multinational corporations.

Lenn has co-authored over 100 scientific publications, technical reports, and presentations in fields such as neuropsychiatry, pharmacogenomics, and adolescent mental health. He has been awarded US Fulbright Scholar Awards twice for biomedical research and teaching in Latin America.

Since 1995, Lenn has held faculty positions in Human Genetics, Epidemiology, and Pharmacy at Virginia Commonwealth University (VCU), the University of North Carolina at Chapel Hill, and the Center for Health Studies in MedellĂ­n, Colombia. While at VCU, he directed the largest twin medical research registry in the United States and is currently on the Steering Committee of the Mid-Atlantic Twin Registry (MATR).

Lenn has consulted for the National Institutes of Health (NIH), World Health Organization (WHO), and numerous corporate clients. Appointed by the Governor of Virginia to the Science Advisory Board of the Science Museum of Virginia, he has also served on the Board of Advisors for GENETWORx and the National Advisory Council for the VCU School of Pharmacy.

Lenn received his BA in Biology from Wake Forest University, MSPH in Epidemiology from the University of North Carolina at Chapel Hill, and PhD in Psychiatric Epidemiology from the University of Pittsburgh. He completed post-doctoral training in genetic epidemiology at the Virginia Institute for Psychiatric and Behavioral Genetics.

Dale Pirkle

BOARD MEMBER, OPERATIONS ADVISOR

A graduate of the United States Military Academy at West Point, Dale served as an Infantry officer and has extensive experience in Senior leadership roles, including his award-winning tenure at Procter & Gamble.

Following graduation from the United States Military Academy at West Point, N.Y., Dale served as an Infantry officer at Ft. Benning, GA, Berlin, Germany, and finally Ft. Bragg, NC.

Following contacts with the Procter & Gamble recruiting team, he joined P&G in 1976. Dale served in a variety of sales and marketing positions for the next 32 years. Highlights of his service include leading the first customer business team P&G fielded, creating the Liga Contra el Cáncer marketing event in Miami, Florida—the most successful and longest-running event in P&G’s history. Upon retirement, he received the Lifetime Achievement Award for his long-term impact on P&G’s culture and the development of future leaders.

Following retirement from P&G, Dale served on the Board of Directors of Seamark Ranch and consulted in development and team effectiveness. Dale joined LCPS Management in December 2012 as Chief Operating Officer. He is actively involved with the CEO to ensure stability and growth of the managed communities.

Freddie Figgers

BOARD MEMBER

Freddie Figgers is an inventor, software engineer, and telecom entrepreneur who founded Figgers Communication, The Figgers Foundation, and FiggHealth. From developing a GPS-enabled shoe to help his father with Alzheimer’s to launching a cloud computing company at 15, he has dedicated his life to innovation and making a positive impact.

Freddie Figgers is the Founder and CEO of Figgers Communication Inc., an American telecommunications operator and manufacturer of smartphones and consumer electronics. Under his leadership, Figgers Communication received the prestigious INC Best in Business 2020 award.

Freddie also founded and serves as Chief Architect of Figgers Health, a company specializing in innovative healthcare devices and software. Starting with a remote patient monitoring cloud solution featuring proprietary blood glucose monitors, Figgers Health has expanded to offer a telehealth platform and electronic health records solutions.

Additionally, Freddie established and chairs The Figgers Foundation, a philanthropic organization dedicated to assisting individuals and families worldwide. The foundation provides support through donations, grants, specialized equipment, manpower, and services in areas such as disaster relief, scholarships, university programs, and food insecurity. During the COVID-19 pandemic, the foundation notably donated and distributed over 2 million units of personal protective equipment (PPE) to first responders, and senior citizens across the country. Freddie also developed a mobile system allowing senior citizens in skilled nursing facilities and hospice care to video chat with their families during the national lock down and ensured children in foster care had access to food.

Freddie Figgers always had a passion for technology. At age 9, Freddie rebuilt a broken Macintosh from a Goodwill thrift store purchased for him by his father, by soldering parts to the circuit board from electronics around his house. At age 12, he started professional tech support and repairs in school during an after-school program, from where the City’s Mayor hired him to repair computers at City of Quincy, FL.

At 15, Freddie Figgers developed his first, of many future inventions, to help his father’s battle with the Dementia Alzheimer’s disease. Freddie built a shoe with a GPS tracker with two-way communication to allow him to communicate directly into his father shoe and track his father.

Freddie later started his own technical support, repairs and software development business in a backyard shed. At 16 he had developed and launched an off-site central storage system serving different local businesses. When he was 19, he applied for FCC telecommunications license to provide Internet service in rural areas in northern Florida and adjacent southern Georgia. At 21 in 2011, he became one of the youngest telecom operator in the United States. Since its inception, Figgers Communication has notably evolved from solely being a telecommunications operator to include manufacturing within its operational scope. The company now produces a wide array of unique services for consumer, business, and government and devices endowed with advanced technology. Figgers products include laptops, touchscreens, desktop PCs, and cellular phones, serving customers globally along with numerous software application suites in the ever-changing landscape of the telecommunication industry.

Christopher Lazzara

BOARD MEMBER, EXECUTIVE ADVISOR

Chris is the Co-founder and CEO of MountainStar Partners. Deeply involved in education, he has overseen the Lazzara Family Foundation, which has granted over $20 million to organizations with zero operating expenses. Chris is Isa Elaine’s father.

Christopher M. Lazzara founded MountainStar Partners in 2013. As Chief Executive Officer, he leads the firm’s investment committee, directs investment strategy, and continues to oversee all major initiatives for the company and its subsidiaries.

In addition to overseeing the growth and success of MountainStar Partners, Mr. Lazzara also co-founded the Georgia School of Orthodontics, in 2016, with his father, an orthodontist. Mr. Lazzara’s leadership has been crucial to the institutions’ continued growth and success. He is a permanent member of the Executive Committee of the GSO Board of Trustees, a position he has held since 2016. Currently, Mr. Lazzara serves as Chair of the School’s Finance and Facilities Committees.

Mr. Lazzara is a respected leader in North Florida. Since founding MountainStar Partners, he has devoted his time to serving on various boards of organizations that align with his values. He has a deep passion for the MaliVai Washington Youth Foundation, where he served for eight years. Additionally, Mr. Lazzara has previously been a member of the University of North Florida’s Student Affairs Community Council and has served as a state appointed Trustee of the University of North Florida for the past five years. His commitment to higher education and community development continues.

Mr. Lazzara attributes his passion to his parents, Irene and Dr. Gasper Lazzara. He was honored to have directed all operations of the Lazzara Family Foundation, which provided grants to worthy organizations. Mr. Lazzara co-chaired the 2016 Cowford Ball benefiting the American Cancer Society, which raised more $650,000 for the fight against cancer.

He currently also serves as board member for the Cultural Council of Greater Jacksonville. Mr. Lazzara is also a member of YPO, the premiere leadership organization of chief executives around the world.

In 2023, his 6-month-old daughter began experiencing symptoms of an ultra-rare and uncurable pediatric disease. Mr. Lazzara responded by founding the Isa Elaine Foundation to benefit others including children. The foundation is committed to sharing research, clinical application and financial resources to help other patients experiencing similar challenges. All financial proceeds from the foundation will benefit the Wolfson Children’s Hospital and Nemours Children’s Health, both located in Jacksonville.

Mr. Lazzara has his degree from the Southern Methodist University as well as certificates from the Wharton School of Business.

Travis Highsmith

Technical Advisor

Travis is currently the Director of Business Intelligence at MountainStar Partners and serves as a Technical Advisor to the Foundation. He leverages his expertise in digital innovation and IT strategy to develop custom digital solutions that align with the Foundation’s mission.

Travis Highsmith is the Director of Business Intelligence at MountainStar Partners and a Technical Advisor to the Foundation. With a strong background in digital innovation, IT strategy, and data analysis, he has developed custom dashboards and digital platforms that transform complex data into actionable insights. A Business Administration graduate from the University of North Florida, Travis blends technical expertise with marketing know-how to create efficient and impactful digital solutions.

At the Foundation, Travis has been instrumental in establishing its digital identity by crafting the branding and designing the website. His integrated approach ensures that technology initiatives not only streamline operations but also support strategic outreach. As the Foundation grows, Travis’s commitment to leveraging technology for tangible results continues to drive the team’s credibility and success.

Kristen Cain

SECRETARY

Kristen currently serves as the Special Projects Manager in the Office of the CEO at MountainStar Partners. As a member of the executive team, she spearheads strategic initiatives and ensures project alignment with the Foundation’s mission.

Kristen currently serves as the Special Projects Manager in the Office of the CEO at MountainStar Partners. As a member of the executive team, she spearheads strategic initiatives and ensures project alignment with company goals. Her experience includes working with children at various educational camps across Pennsylvania and interning at Camp Kostopoulos in Salt Lake City, Utah, where she supported individuals with developmental and physical disabilities. Ms. Cain holds a Bachelor of Science degree in Recreational Therapy with a minor in Psychology from East Carolina University. Her academic and professional background reflects her unwavering commitment to enhancing organizational culture and positively impacting the lives of others.

Carol Lynch

TREASURER

Ms. Lynch serves as a Managing Director of MountainStar Partners and is responsible for all aspects of accounting for the Foundation. Before joining MountainStar in July 2015, Ms. Lynch served as Property Controller for Regency Centers, a publicly traded REIT.

Ms. Lynch serves as a Managing Director of MountainStar Partners and is responsible for all aspects of accounting. Before joining MountainStar in July 2015, Ms. Lynch served as Property Controller for Regency Centers, a publicly traded REIT. Prior to Regency, Ms. Lynch worked in various capacities, including Controller, Financial Reporting Director and Finance Manager for SaaS companies including Black Diamond Performance Reporting, Vurv Technology and Web.com. She began her career as an auditor with KPMG Peat Marwick.

Ms. Lynch serves on the Board of Directors for the MaliVai Washington Youth Foundation. Ms. Lynch holds a Bachelor of Science in Accountancy from California State University, Northridge and an MBA from the University of Florida.

Contact Us

We invite government agencies, research institutions, and potential partners to join us in this urgent endeavor.

Email: [email protected]
Phone: (904) 685-4091
Address: 5000 Sawgrass Village Circle, Suite 25, Ponte Vedra Beach, FL 32082