The Alpha-1 Foundation recently held the highly anticipated 2023 Alpha-1 National Conference “Blazing the Trail Together for Alpha-1” in Dallas, Texas, marking a return to in-person gatherings after three years of virtual programming. From June 9th to 11th, more than 315 in person attendees, including Alphas, friends, family, caregivers, staff, and industry representatives, gathered to connect, learn, and share experiences. This year’s conference combined the best elements of in-person and virtual participation to ensure accessibility and flexibility for all attendees. All presentations were live streamed into a virtual auditorium, allowing over 600 registered individuals to join from the comfort of their homes.
“This year’s theme “Blazing the Trail Together for Alpha-1”, is a tribute to the pioneering spirit that John W. Walsh, Susan Stanley and Sandy Lindsay shared in their quest to find a cure for Alpha-1 Antitrypsin Deficiency,” said Scott Santarella. “We are all inspired by their passion and commitment through their empowered, collective vision and as President and C.E.O.I feel a huge responsibility to carry on their legacy and help finish what they started with the help and dedication of the entire Alpha-1 community.”
Day 1 of the conference offered two tracks, with a focus on Emerging Therapies in Alpha-1. The event began with a conference orientation for first-time attendees led by Cathey Henderson, Director of Community Programs at the Alpha-1 Foundation. Following the orientation, attendees had the opportunity to attend the “Emerging Therapies” presentation, expertly moderated by Dr. Andrew Wilson and Dr. Virginia Clark. This year six companies presented their latest research in the field of upcoming Alpha-1 therapies. The Alpha-1 Foundation expresses its heartfelt appreciation to Beam Therapeutics, BioMarin, Inhibrx, Novo Nordisk, Vertex and Wave Life Sciences for their active participation and contribution to the conference. Thank you to the presenters from each company for their excellent and informative presentations.
Later that day, attendees also had the opportunity to participate in the Research Registry Reception celebrating the enrollment of 3,000 participants. This reception facilitated meaningful discussions and interactions focused on the Alpha-1 Research Registry and how to be part of the cure. Participants gained deeper insights into the importance of the registry in advancing scientific understanding and driving progress in the field. Dr. Jeanine D’Armiento, Principal Investigator for the Registry and Co-Principal Investigator of the Alpha-1 Biomarkers Consortium made remarks about the milestone for the registry and shared how important participation is to help patients get connected to Alpha-1 related studies and clinical trials. Infographic posters were displayed around the room to reflect the important information that has been collected about Alpha-1 patients in this natural history database. The reception fostered connections among researchers, participants, and the Alpha-1 community, strengthening the collaborative spirit of the Foundation.
The Alpha-1 Foundation ensured that all attendees, whether in-person or virtual, had access to the same enriching content and experiences. By live streaming all presentations into the virtual auditorium, the Foundation ensured that individuals unable to attend in person could still engage with the conference. Resources were made available throughout the platform to include in the briefcase feature with the ability to download materials before leaving the platform. This inclusive approach exemplified the commitment to accessibility and flexibility, enabling a wider audience to benefit from the valuable insights shared during the event.
To add a touch of the theme “Blazing the Trail Together for Alpha-1”, in-person attendees were treated to a Western Party Dinner reception and celebration that included lively line-dancing. Participants wore their best western attire and received an Alpha-1 Foundation cowboy hat to get in the spirit. This energizing activity not only provided a fun break but also allowed participants to connect and enjoy each other’s company. The conference aimed to create a full interactive experience that combined educational sessions with moments of joy and camaraderie.
Day 2 of the Alpha-1 National Conference was filled with exciting events and valuable opportunities for attendees. The day kicked off with inspiring opening remarks and presentation by Scott Santarella, Alpha-1 Foundation President & CEO and Jon Hagstrom, Alpha-1 Foundation Chair of the Board of Directors setting the tone for a day of collaboration and learning. Mr. Hagstrom shared his journey as a ZZ Alpha, his double lung transplant and his inspiration to be involved. The conference was made possible by the generous support of the platinum sponsors, AlphaNet, CSL Behring, Grifols, Takeda and Vertex whose dedication and contribution made the event a success. Thank you to Gold Sponsor, Eversana and Silver Sponsors, Accredo and CVS Specialty. During the opening session, AlphaNet, CSL Behring, Grifols and Takeda shared their company’s’ mission, vision and values with the Alpha-1 community. Their unwavering commitment to the patient is evident in all that they do throughout the year.
One of the highlights of the conference was the “Empowerment Hour”, where Alphas engaged in sharing their patient experiences and journeys. A panel of six Alphas, including Natasha Durant, Eric Butcher, Kari Black, Kathi and Dan Coffin and Richard Lovrich joined on stage to share what inspires them and what keeps them going. This included what special song give them the power and strength each day. This session provided a platform for individuals to connect, inspire each other, and find strength in the Alpha-1 community. A common thread in all their stories was that being a part of the Alpha-1 community is empowerment. The appreciation of fellow Alphas, the inspiration from each other’s stories, the lessons learned and the friendships that are built. That is what empowers each of them to make a difference and be a trailblazer.
Attendees also had the privilege to participate in the “Meet the Experts” Roundtables, where they had the chance to interact directly with renowned experts in the field. These engaging discussions covered a wide range of Alpha-1 related topics, allowing attendees to deepen their knowledge and gain valuable insights.
With three tracks running simultaneously, participants had the opportunity to choose sessions that aligned with their interests and needs including but not limited to General Patient Care, Genetics, Regenerative Medicine, Integrative Therapies, Transplant, Public Policy and Alpha-1 Kids Care. The diverse tracks ensured that there was something for everyone, providing a comprehensive and well-rounded experience for all attendees.
The conference presentations will be made available on-demand on the Alpha-1 Foundation’s Vimeo channel, ensuring that the valuable information shared during the event can be accessed and revisited by the community at any time.
On the final morning of the conference, the community came together to honor and remember the Alphas who have passed away in the annual Alpha Angels Memorial Service. The service was led by Fred Walsh and Dan Coffin. Both in-person and virtual participants joined in this solemn and heartfelt occasion, celebrating the memories of those lost. We celebrated each of their lives together as a community in a very special way.
Additionally, support group leaders received specialized training to enhance their abilities to support and guide the Alpha-1 community effectively. This training equipped them with valuable skills and knowledge to make a positive impact in their respective support groups.
The success of the 2023 Alpha-1 National Conference marks a significant milestone for the Alpha-1 community, as it signifies a return to in-person gatherings and the rekindling of the community spirit The Foundation extended its gratitude to Platinum Sponsors: AlphaNet, CSL Behring, Grifols, Takeda, and Vertex, Gold Sponsor, Eversana, and Silver Sponsors: Accredo and CVS Specialty, for their generous support. Their unwavering commitment to the Alpha-1 cause is instrumental in driving progress and improving the lives of individuals affected by Alpha-1.
Thank you to our esteemed presenters: Dr. Mark Brantly, Dr. Michael Campos, Erin Carr, Dr. Virginia Clark, Dr. Jeanine D’Armiento, Dr. Monica Goldklang, Dr. Dana Goldner, Lorrinda Gray-Davis, Dr. Nitika Arora Gupta, Jon Hagstrom, Cathey Horsak Henderson, Dr. Joseph Kaserman, Dr. Darrell Kotton, Jennifer Noonan, Miriam O’Day, Jill Pollander, Dr. Robert Sandhaus, Scott Santarella, Dr. Charlie Strange, Dr. Jeffrey Teckman, Pam VanScoy and Fred Walsh.
The conference’s achievements highlighted the collective commitment to advancing research, raising awareness, and providing support for individuals and families affected by Alpha-1, bringing hope and unity to the community.