Author: Nienke Groenendijk

Your Support Can Change the Story for Millions

Dear friends,

As we move into this season of Thanksgiving, a time for family, connection, gratitude, and taking care of one another, we are reminded of how important it is to support those who may be quietly struggling, without answers, and often without recognition.

Many of you know that our work with the Alpha1 MZ Foundation has become a personal mission for us. The more we learn, the clearer it becomes that millions of people with the Alpha-1 MZ genotype are living with unexplained health challenges, and most have never been told why.

This year, we discovered and confirmed essential insights, including that:

• ~10% of all liver transplants are MZs.
• The MZ liver decompensates twice as fast
• Gallstones and bile duct issues are ~50% more common
• The MZ genotype is the #1 genetic cause of ICP (3× higher risk during pregnancy)
• Reticulocytes are reduced by 31%, affecting red blood cell function
• COPD and bronchitis risk increases by ~40%
• Hormonal dysregulation
• Rheumatoid arthritis is 3× more likely

And yet, most of these people are still told they are not sick and are dismissed, without the proper treatment.

That is why we are working hard to change this!!

This Thanksgiving, we are asking for your support so we can continue our work in four key areas:

1. Awareness & Recognition
   Educating governments, medical organizations, and healthcare organizations to acknowledge the real impact on Alpha1 MZ patients. (Including SZ)
2. Global Expansion
   Building communities and support networks so patients around the world are no longer alone, including bridging the language barriers.
3. Education for Patients and Families
   Giving patients and families the knowledge and confidence to advocate for better care, through our educational newsletters and events, highlighted by the highly successful webinar we presented in October.
4. Fundamental Research
   Including biobanks, biomarkers, and especially Intrahepatic Cholestasis of Pregnancy, where the lives of mothers and babies are directly and seriously affected.

There are 35 million MZ individuals worldwide, and far too many are suffering without understanding the cause, some with liver disease, some with lung issues, some with pregnancy complications, some with autoimmune problems, and many simply feeling unwell without a proper diagnosis and answers.

This Thanksgiving, we have an opportunity to change that, together.

If you feel moved to support our mission, your contribution, large or small, will help us reach more patients with early detection, engage more doctors, accelerate research, education, and webinars, reduce misdiagnosis, prevent suffering, and give patients a voice

We also kindly ask you to share this message with family and friends when appropriate. Every person who learns about this makes our community stronger, raises awareness, and brings us closer to proper recognition and care for the MZ population.

From the bottom of our hearts, thank you for caring, and thank you for helping us build a world where MZ patients are finally understood, diagnosed, and supported.

Wishing you and your family a warm, healthy, and meaningful Thanksgiving,

The Alpha1 MZ Foundation Global Team
(Reinoud, Nienke, Margaret, Jorieke, Laura, Natalia, Fiona and Frans)

👉 Donate today on our website and help move us one step closer to a cure.

Your support truly makes a difference.