Announcing the Establishment of the Alpha-1 Foundation Therapeutic Development Network (TDN)


November 2, 2020- The Alpha-1 Foundation is proud to announce the establishment of the Alpha-1 Foundation Therapeutic Development Network (TDN). The Alpha-1 TDN is a collaborative group comprised of the top specialists, researchers and our biotechnology and pharmaceutical industry partners interested in alpha-1 antitrypsin deficiency (Alpha-1) that will work directly with the Alpha-1 Foundation for every step of development towards a cure.

Working with the TDN gives investigators and industry partners access to specialists and patient partners to advance clinical trials. This will improve trial design and recruitment with a focus on patient focused drug development. At the June Board of Director’s meeting it was determined that the Foundation would bring the Alpha-1 TDN to fruition and take the next steps to bring this new program to the clinical, scientific, industry and patient communities.

The Foundation has been focused on realigning strategic goals as we come upon the organization’s 25th anniversary.  Key components at the heart of this effort include bringing the Alpha-1 Foundation Research Registry into the Foundation, reprioritizing the research investment to have a portfolio that balances between basic and translational science while enhancing the patient community’s involvement with therapeutic development.  The Foundation has always been patient centered but the new FDA guidelines on patient focused drug development gives us an additional set of tools to use when working with trial sponsors.

The Foundation has a long history of a highly collaborative group of scientists and clinicians thru the  successful partnership of the Alpha-1 Clinical Resource Center Network (CRCs). The CRCs are located throughout North America and specialize in patient cate, education and research for those with Alpha-1. The goal is to incorporate many of this network of 70 centers comprised of 82 physicians to engage their patients in recruitment and to build a patient referral network for clinical trial access. The CRCs have the clinical experience and research infrastructure to recruit study participants and conduct successful clinical trials.

“The Alpha-1 TDN will have a designated steering committee with a centralized review of the study design and implementation of the trials, as well as, the development of the trial protocols, site selection, enrollment and education for the Alpha-1 patient community”, said Dr. Martin Zamora, Scientific Advisor and Medical and Scientific Advisory Committee (MASAC) Chair of the Alpha-1 Foundation.

These are steps in the right direction in the process of aligning all assets together to find a cure for Alpha-1 and to find better treatments for Alphas. While the Foundation is focused on delivering for the community, patient involvement is fundamental and participation in the Alpha-1 Research Registry (The Registry) is paramount for this success.  By simply joining the in-house Registry through the online portal, ( patients are already participating in the cure.

“At the 25th anniversary of the Alpha-1 Foundation, we are excited for new opportunities to get us closer to a cure with the patient as the focus of everything that we do. We will continue to celebrate our rich history of research success and investments to stimulate therapeutic development, as well as, create a patient referral network for clinical trial access and centralized patient recruitment”, said Miriam O’Day, President and CEO of the Alpha-1 Foundation.

With all of the Alpha-1 experts collaborating together, we continue to build on the vision of the late Founder, John W. Walsh. Walsh’ vision of joining expertise of the top Alpha-1 researchers and creating a network of the Alpha-1 community is evident in the member composition of the medical and scientific advisory committee (MASAC) and the many working groups of the Foundation.

“I knew John W. Walsh for more than 30 years. I helped work with him and others to establish the Alpha-1 Foundation, to create this marvelous interaction between patients, scientists, donors, and friends. Together, we will keep pushing the envelope and moving the mission, and John’s vision forward. It is incumbent on us to deliver therapies to the Alpha-1 patient community with the Foundation at the center. We have worked tirelessly for years to build this incredible scientific infrastructure with a network of clinicians and a highly collaborative community of scientists and researchers focused on the cure”, explained Dr. Mark Brantly, Interim Scientific Director of the Alpha-1 Foundation.

About the Alpha-1 Foundation

Alpha-1 is a genetic (inherited) condition that is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. The Alpha-1 Foundation, founded in 1995, is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide. The Foundation has invested over $81 million to support Alpha-1 research and programs at 116 institutions in North America, Europe, the Middle East, and Australia.

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Contact: Jeanne Kushner

Director of Communications & Public Affairs

877-228-7321, ext. 204