Alpha-1 Awareness Month Recap: Week 3

As Thanksgiving quickly approaches, family and friends are gathering from across the country to support one cause: Alpha-1! The Alpha-1 Community is currently at 77% of the $70,000 fundraising goal for the 2021 Alpha-1 Virtual Walk and continued participation and support for this amazing cause is encouraged. Be part of the excitement:

The Otto Family created “Team Otto Immune” for their first ever Virtual Walk. They had family in Arizona and Minnesota participate and walk at the same time. Team captain, Madlyn, said “We are the Otto Family and are walking for our mother, Debra Otto and her 7 month old grandson/my nephew, Milo Otto Lee, was diagnosed with Alpha-1 shortly after he was born.”

Another fantastic walk that brought family and friends together was “Team Beckett”, who have participated in the Virtual Walk for three years in a row making it an annual traditional. The Culp Family has raised over $4,000 and recruited over 30 team members to walk this past weekend in Noblesville, Indiana in honor of their daughter Beckett.

Every year the Alpha-1 Foundation staff creates the “Team Miami Office” and schedules up an afternoon to walk around Coral Gables, Florida with local Alphas and friends. Last week, staff members Barbara Rivera and Joy Collins helped generate awareness with the Alpha-1 Foundation’s community partners. Alpha-1 Foundation President and CEO, Scott Santarella also participated in his first Virtual Walk last weekend accompanied by his best bud, Riggins.

On November 19, 2021, the Alpha-1 Foundation hosted the Virtual 23rd Gordon L. Snider Critical Issues Workshop entitled, “Liver Biomarkers and the Path to Alpha-1 Liver Therapies”. The overall goal of the workshop was to bring together researchers, clinicians, and industry representatives to focus on identifying biomarkers to support the path to drug approval in liver disease. The workshop was chaired by Dr. Virginia Clark and Dr. Pavel Strnad. The workshop was composed of several informative sessions focusing on topics such as pediatric liver disease, the regulatory approach to rare and orphan diseases, liver fibrosis and biopsy, ideal target, and current pipeline of AATD liver drugs, and more. The program included presentations followed by open discussion. There was a wide range of attendees, including researchers, clinicians, government representatives, patients, donors, industry, biotech, and academia.

The outcome of this workshop will be a white paper and our proposed collaboration with the regulatory agencies on the issuance of guidance. By bringing together a group of leading experts, we will discuss the use of liver histology and non-invasive markers for clinical trial endpoints. The Foundation is aware that there are many questions outstanding with regards to the development of drug therapy for alpha-1 related liver disease. With exciting new developments in therapies, we intend to have future workshops that focus on new developments and innovative procedures for liver disease. The Foundation has requested permission from the speakers to present their videos publicly after the conference and they will be available for viewing on the website.

The Alpha-1 Foundation wishes everyone a safe, happy, and healthy Thanksgiving! We are grateful for your dedication and commitment to the Alpha-1 Foundation each and every day!