Week 3 brought heartfelt stories, new beginnings, and meaningful moments from teams and walkers across the United States. Each walk and activity showed the strength of the Alpha-1 community and the many personal reasons people get involved during Alpha-1 Awareness Month.
Karin Pittsley, team captain of Pittsley Walking for Alpha-1 Awareness from Dighton, Massachusetts, hosted her first annual Alpha-1 walk around the track at Dighton Town Hall. Forty-five friends and family joined together on a crisp fall day to enjoy raffles, conversation, and community support. Karin’s daughter, Malarie, traveled all the way from Alaska to participate and support her mom. Several friends contributed to beautiful raffle prize baskets. One memorable moment came when Maya, a student from “Mrs. Pittsley’s” class last year, pulled her own name and proudly took home an Alpha-1 teddy bear, purple blanket, and branded tumbler, to continue to raise awareness throughout the year. Pittsley Walking for Alpha-1 Awareness raised $6755 from online donations to date and an additional $425 in-person, making this inaugural event a remarkable success.
In Minnesota, Daniel Ross from St. Paul continued to lead as the highest individual fundraiser so-far for the 2025 A1F Virtual Walks. Diagnosed earlier this spring, Daniel shared openly about learning to manage his health and understanding the importance of supporting Alpha-1 research. His story reflects a deep commitment to building a stronger, healthier future for himself and others living with Alpha-1.
Christy Busey from Leesburg, Virginia shared a powerful update about her journey after being diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) following a hospitalization for COVID pneumonia and a later diagnosis of Stage 3 liver disease, Christy walks to maintain her health while supporting ongoing Alpha-1 research. Her determination underscores why awareness and fundraising efforts are essential. She is walking with her husband throughout November!
Team MI Alphas from Michigan led by Team Captains Megan Lyle, Margie Lyle, and Judy Harnois continued their tradition of supporting the Alpha-1 Foundation in meaningful and creative ways. The support group held their regular meeting with an ice cream social, creating a space for connection, shared experiences, and community building. MI Alphas remains a very active group during the annual A1F Virtual Walks, showing steady and tireless dedication to raising awareness and supporting one another year after year.
Additionally on November 15th, Margie partnered with Megan and Judy to host a combined virtual walk and ice cream social. She proudly surpassed her own fundraising goals, raising $1,210 in total. Margie hopes this will be the first of many team-based efforts, and thanks her family for their support.
Alpha, Jackie English team captain of Open Arms for Alpha-1 from Cambridge, Illinois raised incredible Alpha-1 awareness this year with media coverage from the local Quad Cities channel 8 and a great interview. The Open Arms for Alpha-1 support group hosted their walk at the SouthPark Mall to mark Alpha-1 awareness month and encourage testing for those with persistent respiratory or liver issues. A special thank you to her son, Tyler, for his dedication and support to raising awareness. Read full article. View Coverage.
Sioban Lestina acquired an official proclamation from St. Louis County in Missouri declaring November as Alpha-1 Awareness Month from County Executive Sam Page. Thank you for your continued advocacy efforts and dedication to raising awareness for Alpha-1 both locally and nationally.
Team Vaillancour Little led by Team Captains Bruce Little & Barbara Vaillancour Little from Lockport, Illinois walked in memory of Bob, Ken, and Gary Vaillancour, Barb’s father and two brothers that passed away from Alpha-1. The family walks each year to pay tribute to their memories and support Alpha-1 research that can help prevent loss for other families.
Dana Robert Howard, the team captain of Team Gaux from Lake Charles, Louisiana gathered a group of ten family members to walk in support of their father, who is battling Alpha-1. Their presence together served as a reminder of the strength families bring to this cause, especially during challenging times.
Sioban Lestina acquired an official proclamation from St. Louis County in Missouri declaring November as Alpha-1 Awareness Month from County Executive Sam Page. Thank you for your continued advocacy efforts and dedication to raising awareness for Alpha-1 both locally and nationally.
Week 3 also included a touching family update by Gunilla Beedle from Plainfield, Indiana. She shared a photo taken just after the purple Alpha-1 shirts arrived. During a family visit to Kentucky, Gunilla stood with her sons Alex and Eric (both MZ), daughters-in-law Kayla and Dakoda, and her four grandsons. Her 5-year-old grandson Brooks proudly declared the Alpha-1 shirt was his favorite! With multiple family members tested and identified as MZ, Gunilla’s story highlights the importance of awareness, testing, and generational support.
As we continue to raise awareness, we are proud to host the new Alpha-1 Adult Liver A1F Virtual Support Group meeting on Thursday, November 20th at 7:00 pm ET. This meeting is geared to adult Alpha-1 patients who are liver affected and their family members. Dr. Virginia Clark will be presenting “What you need to know about Alpha-1 Adult Liver Disease & Updates from AASLD The Liver Meeting”. She will be joined by the Adult Liver Support Group Leader, Eric Butcher. Register now.
A1F is excited to participate in the European Alliance Alpha-1 Awareness Month Event 2025 tomorrow, November 20 in Brussels. Momentum is building in the European Parliament for rare diseases, and the Alpha-1 community is ready to seize the opportunity. With the EU unlocking key opportunities like the upcoming Biotech Act and the ongoing implementation of the Substances of Human Origin (SoHO) regulation, now is the time to push for fair access to plasma-derived therapies and better care for all rare disease patients. Presenters include Scott Santarella, A1F President & CEO, MEP Olivier Chastel from Belgium, and Prof. Pavel Strnad, as well as patient and panelists. Register for virtual event.
Week 3 showcased the power of the Alpha-1 community, the resilience of families, and the meaningful ways individuals honor and remember loved ones while supporting the Alpha-1 Foundation mission. Each story and walk strengthens our collective commitment as we move into the last 10 days of Alpha-1 Awareness Month.
