2023 Alpha-1 Awareness Month: Week 2 Highlights

Week 2 of the 2023 Alpha-1 Awareness Month was a huge success! The Alpha-1 Virtual Walks are off to an incredible start, with participants wearing a wave of purple t-shirts while hosting walks and awareness events nationwide. As the momentum builds, heartwarming stories of dedication and support continue to emerge.

A heartfelt thank you goes out to Memory Whitlock and Team Steve, who marked their 8th consecutive year of participation in West Monroe, Louisiana. With over 30 family and friends, they walked in memory of her late husband, Steve, raising an impressive $4,000. The Whitlock Family’s steadfast support is a beacon in the mission to find a cure for Alpha-1 and raise awareness.

Lisa Kosak from Vero Beach, Florida and Team Breathe Easy/Walk’n Wags added a creative touch to their commitment by hosting a card night at the Vero Beach Card Club in addition to their walk. With the support of family from around the country, Lisa will be walking throughout the month to continue to raise awareness all month long.

Daniel Kulowiec, team captain of the Breathe Easy Brigade team, demonstrated dedication beyond the ordinary by combining a walk with a Veteran’s Day cookout in Newport, North Carolina. “This day is special to me as it is the Marine Corps 248th birthday, my first year as a veteran and combined with Alpha-1 Awareness over the Veteran’s Day weekend,” said Daniel.

A special shoutout goes to Craig Hamilton, who promoted his “Utah Rocks for Alpha-1” awareness event on the Spanish Fork, Utah “Studio Chatter” television segment. Scheduled for Saturday, November 18th, this rock concert promises to contribute to the ongoing efforts of increasing awareness.

Amidst these remarkable efforts, individuals from different corners of the country continue to make their move throughout November. Lynn Soriano and her husband, from Commack, New York, have set a challenge to walk every day of November, rain or shine. In Russellville, Arkansas, Anita Sellers with Team Arkansas Friends are moving for Alpha-1 daily, with Anita’s goal to cover 150 miles in memory of her late husband, Keith. Anita is also spearheading a raffle for a University of Arkansas Razorback themed quilt which successfully raised over $4,000 to date this year!

  • CSL Behring showed their industry partnership by mobilizing over 60 employees to walk at their King of Prussia, Pennsylvania offices. Thank you for CSL Behring’s continued commitment as a presenting sponsor of the Building Friends for a Cure Program.
  • Inhibrx’s Team ElevAATe had over 30 participants walk in San Deigo, California made a significant impact, contributing a generous $10,000 sponsorship.
  • Wave Life Sciences’ Team RestorAATion also had 30 employees walk in Lexington, Massachusetts.

The Alpha-1 Boston Education Day joined over 100 attendees for an informative day of learning. Participants joined in their purple shirts and wrote on their awareness month paddles how they are making their move for Alpha-1.  Dr. Andrew Wilson, Alpha-1 Foundation Scientific Directorand members of the CReM (Boston University Lab) added their expertise to the event, and notable leaders such as Alpha-1 Foundation President and C.E.O. Scott Santarella and board members, Fred Walsh and Jon Hagstrom, as well as Dr. Jeanine D’Armiento, Dr. Craig Hersh, Dr. Terrance Flotte, Dr. Joseph Kaserman and Dr. Nirmal S. Sharma joined this highly- anticipated event in Newton, Massachusetts.

While in Boston from November 10th to November 14th, the Alpha-1 Foundation exhibited at the American Association for the Study of Liver Diseases (AASLD) annual event hosted at the John B. Hynes Veterans Memorial Convention Center. The Liver Meeting provided an opportunity to raise awareness for Alpha-1 antitrypsin deficiency while connecting with researchers, clinicians, and industry experts worldwide to collaborate, share groundbreaking research, and explore and contribute to advances in the study and treatment of liver diseases for our Alpha-1 patients.

Additionally, the Alpha-1 Foundation attended the European Parliament on Tuesday, November 14th, in Brussels, Belgium, to highlight #Alpha1Awareness Month and the efforts of patients and European policymakers as they strive for a better quality of life and greater treatment accessibility for alphas worldwide. Thank you to board member, Dr. Gerry McElvaney for his participation in this event!

Thanks to the commitment of the Alpha-1 advocates team, two new co-sponsors have signed on this week to H.R. 4438: The John W. Walsh Home Infusion Act including Representative Troy Carter from Louisiana (D-LA-02) and Representative Jason Crow (D-CO-06). The total number of co-sponsors is now up to 28!

As we hit the halfway point of Alpha-1 Awareness Month, these stories of resilience, remembrance, and community support echo the collective determination to combat Alpha-1. The Alpha-1 Virtual Walks are not just events; it is a movement fueled by compassion, and each participant is a crucial part of this inspiring journey toward a healthier future. The passion of the community is evident in the many activities that continue to occur throughout this month and the entire year!

Have you made your move for Alpha-1… there is still time… Keep Moving!

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