In late November, the Alpha-1 community gathered in person and virtually to share stories of hope, resilience, and progress. The week began with inspiring videos from several Members of the European Parliament showcasing global collaboration and moved into the Thanksgiving holiday by highlighting the importance of family testing for Alpha-1.
Alpha-1 Foundation Board Member Erin Carr promoted the Pediatric Voucher Program, advocating for families and vital research dollars, while Tammy McGuinness brought the patient voice to the FDA, advocating for expedited research and approval pathways. Alpha-1 Advocacy also included state proclamations in New York and Indiana, meetings with Congressional offices, and a Zoom session with New York representatives to push for rare disease awareness and funding.
Powerful Alpha-1 stories were shared throughout the week. Kathi and Dan Coffin’s Alpha-1 awareness video inspired the community, while Brian and Amber Pelletier, Alpha-1 Support Group Leaders, highlighted the patient voice while sharing their Alpha-1 story with industry employees. Caregivers like David Black, Alpha-1 Support Group Leader, were celebrated for their dedication to their Alpha-1 families. Globally, European Union meetings strengthened international strategies, and A1F Virtual Walks united over 800 participants, raising funds and awareness for Alpha-1.
This Alpha-1 Awareness Month, we witnessed the incredible power of connection on our social media platforms like never before. Engagement and involvement soared to new heights as individuals around the globe shared and reshared their personal Alpha-1 journeys, raised funds to support Alpha-1 research and related programs, and utilized their collective voices to increase awareness of Alpha-1.
Scott Santarella, A1F President and CEO, connected about Alpha-1 Awareness Month on a Takeda podcast with Richard Ascroft, Senior Vice President, Head of US Plasma-Derived Therapies at Takeda. The podcast was shared on LinkedIn on November 25th and raised awareness across the platform. Scott emphasized during the interview, “Collaboration among patients, industry leaders, healthcare providers, and policymakers is essential to addressing the barriers that still exist. It is essential that policymakers continue to support medical research that will help lead to further innovation. We need to continue educating and empowering all stakeholders—including physicians, nurses and other frontline caregivers—to ensure that Alpha-1 patients receive timely diagnoses and comprehensive care. We recognize the importance of the patient voice and the collective impact the patient community can have on awareness and advocacy. This collective approach will help us make significant strides toward better health outcomes and a stronger support system for those affected by Alpha-1.”
A1F Virtual Walk teams across the U.S. made remarkable contributions to close out this Alpha-1 Awareness Month campaign. 62 teams contributed to surpass this year’s fundraising goal of $70,000, raising a total of $77,786 to date!
Highlights from the last 10 days of November 2024:
- Anita Sellers of Team Arkansas Friends raised $9,000 through their creative efforts. Anita walks each year in memory of her late husband, Keith. Anita has raised nearly $80,000 for the Alpha-1 Foundation over the years and relies on her support network of family and friends from Russellville, Arkansas. She started the “Change for a Cure” jar where she collects loose change for a cure and created a handmade autographed University of Arkansas Razorback themed t-shirt quilt for auction. Anita added an extra element to this year’s walk by adding in three mountains, Magazine Mountain (9.2 miles), Mount Nebo (6.2 miles) and Danville Mountain (3.2 miles). “For me, it’s all about a cure!”- Anita Sellers
- Marilyn Bailey from Atlanta, Georgia, celebrated her birthday by walking 15 miles on her treadmill during November.
- Team Korro Bio walked in Cambridge, Massachusetts and stepped up the challenge this year. The Korro Run Club dedicated all their outings to the Alpha-1 Awareness Month campaign and were so grateful to be part of this experience!
- Deb and Tony Labud captains of Team Together We Can based in Florida walked the Blue Ridge Mountains in Georgia during their family Thanksgiving vacation.
- Team CSL 2024 walked together in King of Prussia, Pennsylvania at their offices.
- Team Illiana Alphas led by Team Captains Donna and Tim David hosted their walk in Terre Haute, Indiana. The couple were able to secure a proclamation and raised awareness with an Alpha-1 display at the entrance to the mayor’s office.
- Team Ashlynn organized by Captain and mom Melanie McLeod was held on November 23rd at a local park in sunny Crawfordville, Florida walking in honor of their 13-year-old “Alpha Girl” Ashlynn. Ashlynn wants to raise Alpha-1 awareness and one day wants to become an Alpha-1 Researcher to help find a cure.
- Thank you, Team JLP and team captain Lauren Herrin of Brunswick, Georgia for organizing a walk again this year in memory of your father both locally and in Denver, Colorado.
- Thank you to the Virginia Alphas for coming together the day before Thanksgiving! Team Captain and Alpha-1 Support Group Leader Deb-Webb Howells, alongside Andrea West, partnered with the Richmond Alpha-1 Support Group led by Jason Weaver and his family and friends, as well as Joanie Williams, co-leader of the Norfolk Alpha-1 Support Group. The group gathered at Preddy Park in Charlottesville, VA, for this meaningful event.
Thank you to our industry partners who support the Building Friends for a Cure (BFC) Program and Alpha-1 Awareness Month – AlphaNet, CSL Behring, Grifols, and Takeda.
As November concluded, the achievements of this impactful week highlighted “The Power of Connection,” generating strength and unity for the Alpha-1 community.
