We are a team of individuals, who noticed that an alpha-1 antitrypsin deficiency with genotype MZ, which affects over 35 million persons globally, is severely underdiagnosed and that symptoms are regularly missed and/or dismissed.
Persons with Alpha -1 MZ were until recently considered of little or negligible risk. However, a growing number of studies show that Alpha-1 MZ individuals have an increased risk of developing lung and liver disease when exposed to airborne or industrial pollutants, and to hepatotoxic substances. These studies also reveal possible connective tissue issues in tendon sheets and ligaments, impaired anti-inflammatory properties of the MZ protein, and a higher risk of autoimmune diseases.
Because Alpha-1 MZ is very hard to diagnose or recognize based on the various (often second and third order) symptoms, a large percentage of the 35 million persons globally are not receiving proper medical care, resulting in high costs of medical care, loss of productive labor, a reduced quality of life, which can be avoided providing preventive care, and proper treatment especially of the second and third order symptoms, until adequate treatment is available.
We at the Alpha1 MZ Foundation don’t provide medical advice, but we are merely connecting the dots between various medical research literature, including clinical cases out of the Alpha 1 MZ group.
Please meet our team members
Frans Frielink
Founder and researcher
Frans Frielink lives in Belgium and has a research and development background, with over 40 years of experience in the semiconductor industry leading engineering, marketing and business development. He leads and shapes the direction of companies, has driven the WiFi market to a massive worldwide success, and established GreenPeak as the market leader in the fast growing Smart Home and IOT market.
Frans holds patents in different fields, and is currently active as chairman, board member and advisor for companies in different emerging technologies and markets. Frans is an Alpha-1 MZ, and started to study medical literature in 2020, which enabled him to diagnose and resolve his medical issues. He is the founding father of the Alpha1 MZ Foundation.
Reinoud Doeschot
Secretary and researcher
“My personal journey with Alpha-1 began when several family members received their diagnosis. Initially, my focus was on reimbursement options for augmentation therapy due to my previous work with the National Care Institute.
As I delved deeper into Alpha-1, I discovered a significant lack of awareness and understanding surrounding this condition. The fact that so many people remain undiagnosed or receive a late diagnosis, coupled with the realization of its widespread prevalence and the multifaceted role of antitrypsin in the body, sparked my interest in the relationship between Alpha-1 and autoimmune diseases.
Throughout my career, I have had the privilege of contributing to the fields of social security and healthcare in various capacities. I have authored several books on these topics and served as the publisher of the Pharmaco-therapeutic Compass (Farmacotherapeutisch Kompas) in the Netherlands.
My professional journey began as a university researcher, followed by various research leadership positions at the Ministry of Social Affairs and the National Care Institute. Additionally, I have actively participated in board functions, including serving as a trustee of the Lansbury House Trust Fund.
I am excited to be a part of the Alpha-1 MZ Foundation Board. I firmly believe that this organization is a vital platform for advancing Alpha-1 research, increasing awareness, and ultimately improving the lives of patients.”
Margaret Millar
Patient advocate and Facebook moderator
Margaret Millar is an avid Alpha-1 patient advocate serving Alpha’s with a lifetime of familial and community experience. Advocating across the board with the Alpha 1 MZ Foundation, the Global Liver Institute, the Alpha 1 Advocacy & Action Coalition, and many other patient groups and stakeholders. Keeping up to date with many aspects of advocacy, such as research into symptoms, clinical trials, pathways, and policy, always keeping the best interests of our greater global Alpha 1 family in the forefront.
Her passion, delight, and pleasure are to serve our greater Alpha-1 community.
Dr. Laura Bonebrake
OB/Gyn (United States)
Dr. Laura K. Bonebrake (Anderson) is an obstetrician-gynecologist in St. Louis, Missouri (USA) and is affiliated with multiple hospitals in the area. She received her medical degree from Creighton University School of Medicine and has been in practice between 11-20 years. Her research interests include Intrahepatic Cholestasis of Pregnancy and its intersection with other liver disorders, with special interest in the interaction of hormones and liver disease. She serves on the Board of Directors of ICP Care, a non-profit patient advocacy organization which raises awareness of ICP, a rare disorder, to both patients and providers. She also has a personal connection to liver disease as she had ICP in all of her pregnancies, leading to a subsequent diagnosis of Alpha-1 MZ.
Diana Bieniek
BSc in biochemistry, MSc in holistic nutrition
“I first heard the words alpha-1 antitrypsin deficiency (AATD) in the early 1990s when my dad essentially diagnosed himself with the genetic disorder, testing through the Medical University South Carolina because his physician refused to test him. Testing revealed that he was a ZZ lung-affected (and probably liver-affected) alpha who was severely affected in his 50s. I helped him navigate the lung transplant route, but he was ultimately rejected as a candidate. He passed away in 1998 from AATD-related lung disease. Consequently, as an MZ myself, I have been researching AATD for around 30 years.
I have a Bachelor of Science degree in biochemistry and a Master of Science degree in holistic nutrition, both of which have helped me understand the primary literature of AATD and to help mitigate health issues I believe are related to AATD when the medical community has had little to offer. Given that treatment options for the unique MZ condition are generally limited, nutrition and lifestyle become very important for quality of life. My greatest desire is to be of assistance to the MZ community by sharing what I have learned through my education, research and my experience as an MZ Alpha.”
Fiona Palmer North
Research, bioinformatics, pharmaceutical & computer science
Fiona is a tutor at Queen’s University Belfast in the School of Electronics, Electrical Engineering, and Computer Science (EEECS). She holds a PhD in chemistry, a BSc in biochemistry, a postgraduate diploma in chemistry, and a Master’s in computing and information systems. Her interdisciplinary career spans pharmaceutical science, technology, and research—including work at Pfizer in drug metabolism and early bioinformatics research focused on gene expression and peptide-based therapies.
Fiona brings not only academic and industry expertise but also a deep personal interest in how emerging technologies can enhance genomics-informed healthcare, lifestyle decision-making, and personalized medicine. As a mother of four, she blends professional experience with lived insight.
She is a passionate advocate for greater recognition of overlooked genetic traits—such as the MZ Alpha-1 Antitrypsin genotype—and their potential role in drug response and long-term health outcomes.
