Alpha1 MZ Foundation
We are a team of individuals who noticed that an alpha-1 antitrypsin deficiency with genotype MZ, which affects >35 million persons globally, is severely underdiagnosed and that symptoms are regularly missed and/or dismissed.
Until recently, people with Alpha-1 MZ were considered to have little or negligible risk. However, a growing number of studies show that they are at an increased risk of developing lung and liver diseases when exposed to airborne or industrial pollutants and 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.
Since Alpha-1 MZ is very hard to diagnose or recognize based on the various symptoms (often of the 2e and 3e order), many of the 35 million people globally are not receiving the correct/proper medical care. This results in a high medical care cost, loss of productive labor, and a reduced quality of life. However, these problems can be avoided by providing preventive care and proper treatment, especially of the 2e and 3e order symptoms, until adequate treatment is available.
We at the Alpha1 MZ Foundation don’t provide medical advice, but we merely connect the dots between various medical research literature, including clinical cases out of the Alpha-1 MZ group.
Our team
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.
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Reinoud Doeschot
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 Dutch 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.
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Margaret Millar is an avid Alpha-1 patient advocate serving Alphas with a lifetime of familial and community experience. Advocating across the board with the Alpha-1 MZ Foundation, Global Liver Institute, 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.
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