2023 Alpha-1 Awareness Month: Week 1 Highlights

“Make your Move” into the journey of Alpha-1 Awareness Month with our Week 1 Recap! The enthusiasm and commitment of our incredible team captains and volunteers have set the pace for an inspiring month ahead.

The Alpha-1 Virtual Walk Kickoff Celebration on November 1st brought the Alpha-1 community together, with teams from across the country sharing heartfelt stories and strategies to increase awareness of Alpha-1. Participants learned how easy raising funds can be using the activities calendar. Team participants shared their Alpha journeys, learned the many ways to get involved and shared their excitement for the next 30 days!

The Miami Office Team kicked off the month during a walk in Coral Gables, Florida wearing their 2023 t-shirts, carrying purple balloons and signs!

As part of the Alpha-1 Virtual Walk campaign this year, the Foundation has launched “Good Move,” a free phone app that can be easily downloaded to track your steps and all the acts of kindness that you are going to do this month.

As an early Alpha-1 Awareness Month celebration, the Alpha-1 Foundation Board of Directors and members of the Medical and Scientific Advisory Committee (MASAC) met to increase awareness in Bethesda, Maryland on October 28th. Their commitment to the community and the advancement of Alpha-1 research takes place all year long and we are grateful for their dedication and hard work.

Brad Zelk, an Alpha dad and new pilot for Southwest Airlines, submitted Alpha-1 to Southwest for the charity to give a one-time gift of $737 this month (just like their planes) and was chosen to share a presentation on Alpha-1 to the company earlier this month.

The advocacy team is working hard to secure co-sponsors for H.R. 4438: John W. Walsh Home Infusion Act of 2023. This bill provides Medicare coverage of treatment for Alpha-1 Antitrypsin (AAT) Deficiency (a protein deficiency that raises the risk of lung and other diseases). Specifically, the bill provides for coverage of at-home augmentation therapy for beneficiaries with emphysema because of severe hereditary Alpha-1. Treatment must be provided through qualified home infusion therapy suppliers; beneficiaries must be under the care of a physician, nurse practitioner, or physician assistant. To date, Maria Salazar (R-FL27) and 25 cosponsors from across the nation have signed onto the bill, including 16 Democrats and 9 Republicans. Get your state on the map and get involved in our efforts! Contact Jeanne Kushner at jkushner@alpha1.org.

The first Virtual Walker, Joanne Tanner, embarked on a half marathon in Gillette, Wyoming, dedicating her run to loved ones, including her husband and his late brother and mother.

Over the weekend, Team Harrison in Lexington, KY, hosted their annual walk, with over 40 friends and family. Walking for their son Harrison, the Stephens family engaged in various events, including a crock-pot cookoff and a shopping extravaganza. Hillary Stephens, Harrison’s mom, expressed gratitude for the support they have found through the Alpha-1 Foundation, emphasizing the importance of awareness in helping others and finding a cure.

In Lincoln, Nebraska, Chelsea Boring and Nora Kremmer, leaders of the Big Red Alphas support group, organized a walk at Westfield Gateway Mall. With over 20 participants, including Larry Zimmerman, Anne Baumgartner, Janet and Fred Smith and Mary Farber they had a great time and answered questions about Alpha-1 from curious onlookers. Their dedication was recognized with a proclamation establishing November as Alpha-1 Awareness Month from Governor Pillen.

Team Ashlynn, led by Melanie McLeod, honored Little Alpha Ashlynn with a walk at Cascades Park in Tallahassee. The walk, hosted by Ashlynn’s Girl Scout Troop, involved about 50 girls raising awareness by wearing purple. Meanwhile, Stacey Wing and Tae’s Team celebrated in Bath, NY, with a birthday walk for Tae, who walks for herself and all Alphas.

Thank you to Dr. Wilson, Alpha-1 Foundation Scientific Director, and Team BU/BMC for putting together their team and raising awareness at the Center for Regenerative Medicine (CReM) at Boston University.

The awareness impact extended beyond individual efforts. Vital Care, a pharmacy franchise network, collaborated with the Alpha-1 Foundation during their Annual Franchise Conference in Orlando, FL. The Wellness Activity featured a 5K Run/Walk, bringing together 75 participants who raised an impressive $10,800 for the cause.

As Alpha-1 Awareness Month and the Alpha-1 Virtual Walk continues, there’s still time to join, form a team, or register as an individual. Don’t miss the chance to share your Alpha-1 story and make a difference in November. Track your progress with the Good Move app, earn points for activities, and stay active.

Want to be featured in next week’s recap? Submit your photos to Irene Calderon at icalderon@alpha1.org.

Let’s keep making our move for Alpha-1!

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