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.”
Nienke Groenendijk
Financials and communication
Nienke Groenendijk lives in the Netherlands and holds a Master of Arts in French language and literature (University of Amsterdam, 1980). She is a sworn translator French-English-Dutch, specializing in medical, legal and financial translation. Her interest in the medical field was triggered when she experienced her first health issues, over 30 years ago. At the time, she was diagnosed as an Alpha, but the doctors did not know about the existence of compound heterozygosity and told her she was ‘just a carrier’.
In order to gain more knowledge of the medical field, she followed different in-depth courses, amongst others a one-year post-academic course in medical translation at Utrecht University. By working as a translator/copywriter and at the same time expanding her knowledge, Nienke has obtained a broad knowledge of different medical subjects.
She’s an Alpha with a severe deficiency and a rather rare phenotype. Only recently she started receiving augmentation therapy, thanks to the specialized Alpha team at the LUMC hospital in Leiden.
As a member of the Alpha-1 MZ Foundation Board, as well as webmaster and board member of the Belgian patient organisation Alpha-1 Plus Belgium – and as a patient -, she stands up for the interests of other Alpha’s and tries to create more awareness amongst both doctors and the public of this underdiagnosed but often life-changing genetic condition.
Kristin Hatcher
Data / patient registry
Kristin is an MZ Alpha herself. As the Director of Pediatric and Rare Liver Diseases with the Global Liver Institute, Kristin is tasked with improving the lives of individuals impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.
Prior to joining GLI, Kristin was the Deputy Director of Operations at COMBINEDBrain, a consortium of over 100 rare, genetic neurological pediatric patient advocacy groups with the mission of creating biomarkers and outcome measures. During her time at COMBINEDBrain, she developed a passion for the patient role in drug development, a love of the use of data to gain insight into patient perspectives, and learned the power of combining rare diseases to speed the pathway to treatment and cures.
As the oldest living diagnosed Alpha in her family, her goal is to also be the first Alpha in her family to make it to 65. When she isn’t advocating for rare diseases, she enjoys traveling with her husband, visiting her grown daughter, playing with her beloved GoldenDoodle, talking to her millions of girlfriends, catching up with her previous students, practicing yoga, and volunteering for Voices for Victims.
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.
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.