Our Leadership Team

Our leadership powers our mission and vision in some pretty amazing ways. We couldn’t accomplish much without their energy, dedication and talent. Learn more about the people behind our organization.

Medical Advisory Board

Dr. M. Mahmood Hussain

President

Dr. Hussain is a Distinguished Professor of the State University of New York Downstate Medical Center, Brooklyn, N.Y.; Endowed Chair of the Department of Foundations of Medicine, and the Director of the Diabetes and Obesity Research Center at New York University Long Island School of Medicine, Mineola, N.Y.

Dr. Hussain’s laboratory focuses on the assembly and secretion of apolipoprotein B-containing lipoproteins in the liver and intestine with an emphasis on understanding different regulatory mechanisms and the structure-function of microsomal triglyceride transfer protein (MTP). His studies focus on how the MicroRNAs, circadian rhythms and transcription factors regulate MTP expression to modulate plasma lipid levels, atherosclerosis and obesity. To further the understanding of the MTP biology, he is studying its function in other tissues not involved in the lipoprotein assembly and secretion, such as pancreas, adipose, testis and ovary.

Cindy Bredefeld, DO

Secretary

Dr. Bredefeld is an Endocrinologist at New York University Langone Diabetes & Endocrinology Associates-Long Island, Assistant Professor of Clinical Medicine at NYU Long Island School of Medicine, and the Director of Diabetes and Lipid Clinical Trials.

As a board-certified lipidologist, her clinical practice focuses on the diagnosis and management of a range of lipid disorders. She regularly lectures on topics in clinical lipidology and is the principal investigator of randomized controlled clinical trials in the field. Together with other members of the Abetalipoproteinemia and Related Disorders Foundation, she is working to increase awareness and improve the quality of care for patients affected by these rare disorders.

Dennis D. Black, MD

Dr. Black is a pediatric Gastroenterologist at the Le Bonheur Children’s Hospital, Memphis, TN. Black is the scientific director of the Children’s Foundation Research Institute (CFRI).

As a clinician he specializes in pediatric liver diseases and was part of the team responsible for the very first living donor liver transplant in a pediatric patient in the country in 1989 at the University of Chicago. As a scientist, Black has taken a fascination to studying lipids and understanding how they are absorbed in children and neonates. He has focused on apolipoprotein A-IV and demonstrated a role for this protein in facilitating fat absorption in the neonatal small intestine.

He was recruited in 1999 to serve as scientific director for the Children’s Foundation Research Institute. He is also vice president of Research at Le Bonheur and the J. D. Buckman endowed professor of pediatrics and physiology at the University of Tennessee Health Science Center (UTHSC).

Mitchell F. Brin, MD, FAAN, FANA, FAHS

Dr. Brin is a Clinical Professor of Neurology at the University of California, Irvine, CA.

His internship from 1979-1980 was with Icahn School of Medicine at Mount Sinai/Mount Sinai Hospital. From 1980-1983 he was a resident doctor at the New York Presbyterian Hospital (Columbia Campus) in the field of neurology. He completed a Fellowship that lasted from 1983-1986 at Columbia University Neurologic Institute that focused on movement disorders.

Ettie Granot

egranot@ablplusfoundation.org

Dr. Granot is a graduate of the Hebrew University-Hadassah Medical School in Jerusalem and Professor (Emeritus) of Pediatrics at the Faculty of Medicine of the Hebrew University , Jerusalem. Granot is a Specialist in Pediatrics, Gastroenterology , Nutrition and Hepatology.

Prof. Granot served as Head of Pediatric Gastroenterology at the Hadassah Medical Center , Jerusalem and as Director of the Division of Pediatrics at Kaplan Medical Center , Rehovot. She currently heads the Pediatric Liver Disease Service at Kaplan Medical Center. Among her various academic positions at the Faculty of Medicine of the Hebrew University, Prof. Granot served as Chairperson of Pediatric Studies. Basic science research has focused mainly on lipoproteins and fatty acid metabolism. Other research areas include GI infectious diseases and malabsorption disorders. Prof. Granot also has an MHA degree ( Master’s in Health Administration) from Ben Gurion University.

Patient Caregiver Committee

The Patient Caregiver Committee is comprised of dedicated volunteers who are all patients or caregivers. They are an essential part of our leadership team.

Paul Biderman

Patient Liaison

Mr. Biderman was diagnosed with Abetalipoproteinemia in 1966, prior to his first birthday. He leads an Abetalipoproteinemia Facebook group and serves as a valuable resource to other patients and their caregivers. He has been active in the patient community for more than 20 years.

Ann Marie Bucchino

Treasurer

Ann Marie is a retired bank executive who has provided financial guidance to various non-profit organizations since retiring. She is an accomplished glass artist, and a dedicated grandmother and caregiver to 8 year old Louis, who was diagnosed with Abetalipoproteinemia at the age of 3 months. Her desire to study and understand the impact of ABL on her grandson’s development became an important factor in the identification and diagnosis of additional genetic disorders affecting his health that were unrelated to the original ABL diagnosis. Ann Marie stresses that ABL can have a unique affect on each patient, highlighting the importance of being involved in the ABL+ community and advocating for doctor and patient education.

Riley Gutièrrez McDermid

Mom/Patient Advocate

is a managing editor at The Baltimore Sun and a mother of four. Her son Luca was diagnosed with chylomicron retention disorder when he was a year old, after a horrific first 12 months of near starvation. He was diagnosed via genetic testing and he and Riley now speak regularly at conferences and events to advocate for early genetic testing to catch rare disease. We also provide support to families who have recently had children who are diagnosed and with our ABLPlus Foundation family. Our message is to never give up hope, because with the right information and educating your doctor, can greatly improve the quality of life.

Liz Naron

Mom/Patient Advocate

Liz is a Registered Nurse and mother of Megan who was diagnosed with Abetalipoproteinemia at the age of 10 months. She is a caregiver and a dedicated advocate for her daughter, patients and ABL research.

Joe Terry

Patient Advocate

More about Joe coming soon.

Gisela Victoria

Mom/Patient Advocate

Gisela Victoria is a dedicated mother and caregiver to her daughter, Noah Maria, who was diagnosed with Abetalipoproteinemia when she was six months old. She is also an accomplished artist and recently a RareArtist awardee in 2023. She uses her art to advocate for those affected by rare diseases. Her motivation to share her stories today stems from her firsthand experience as a caregiver and her understanding of the broader family implications of rare diseases.

Noah Victoria

Patient Advocate

More about Noah coming soon.

Kristian Raupp

Dad/Newsletter Editor

Kristian Raupp is the father of Davi, who was diagnosed with Abetalipoproteinemia when he was five months old.

With the help of great doctors in Brazil and the support of the ABL+ community, Kristian and his wife Roberta managed the treatment properly so that Davi could develop very healthily. Today Davi is ten years old and is a beautiful, kind, and brave boy.

After joining the ABL+ community, Kristian was approached by relatives of three other patients in Brazil and was able to share valuable information with these families.

He currently collaborates in the organization of the ABL+ Foundation’s newsletters.

In Memoriam

Richard J. Deckelbaum, MD, CM

Co-Founder/Former Vice President

Dr. Deckelbaum was a driving force in the creation and growth of the ABL+ Foundation. He was a dedicated clinical scientist who had a strong desire to spread awareness and education about the illnesses the ABL+ Foundation is concerned with. He was always happy to give his time to a patient or caregiver to help them find a proper diagnosis. Dr. Deckelbaum frequently reminded us that unlike most rare diseases, the illnesses the ABL+ Foundation is concerned with actually have viable treatments.

Dr. Deckelbaum’s contributions to the ABL+ Foundation will always be remembered and he can never be replaced.