This week showcased the heart, dedication, and spirit of the Alpha-1 community as everyone raised awareness; teams and supporters walked, fundraised, honored and remembered loved ones, and connected from across the country and beyond.
This week’s theme focuses on the theme of IMPACT. Your continued support resonates through every breakthrough, and the life of every Alpha the Alpha-1 Foundation touches. Together, we are creating a legacy of hope, possibility and progress; one that will resonate for generations to come.
A1F will be highlighted its IMPACT throughout all outlets this week including email and social media platforms, showcasing IMPACT throughout A1F programs.
Richard Lovrich met with New York State representatives Governor Kathy Hochul and NY State Senator Jim Tedisco to be presented a NYS Senate Resolution authorizing “Alpha-1 Awareness Month in the State of New York.” Senator Tedisco even shared information on Alpha-1 awareness on his social media accounts and thanked Richard for his dedication to the Alpha-1 community.
“Under the incredible voice and caring leadership of Richard Lovrich, the Capital Region of New York Alpha-1 Support Group helps people develop and enhance a healthier sense of personal identity and a connection with the large Alpha-1 community. Thanks to Richard for his advocacy to help people with Alpha-1 and bring about more awareness of this condition, “stated Senator Tedisco.
Richard also thanked NY State Assemblyman Angelo Santabarbara and Congressman Paul D. Tonko for their support in raising awareness for Alpha-1 in November and all year long. Rep. Tonko co-signed H.R. 2343: The John W. Walsh Home Infusion Act.
The FL Gulf Coast Alphas Support Group, led by co-leaders Catherine Vernon and Laura Bornstein, was held on Saturday, November 22nd in Venice, Florida. The group created Alpha-1 Foundation (A1F) swag bags for all the attendees. The viewed the virtual presentation given by Dr. Sandhaus on the very interesting topic of “Is My Other Medical Condition Related to My Alpha-1.” The group was joined by special guest, Dr. Margarite Angelopoulos, a neonatologist who has treated babies with Alpha-1 liver disease.
Week 4 proved to be an eventful week for the A1F Virtual Walks from coast to coast.
Team Arkansas Friends led by Team Captain Anita Sellers from Russellville, AR marked the 5-year anniversary of Keith’s passing with a powerful month of movement, community, and remembrance. Teammates joined Anita from near and far and walked every single day in November for a total of 400 miles. Anita Continued her annual Razorback quilt raffle with a handmade autographed University of Arkansas Razorback themed t-shirt quilt. Anita stayed active all month by participating in multiple marathons throughout the month.
Anita is one of our top fundraisers, leading “Arkansas Friends” for eight years and raising over $85,000 for the Foundation. Her dedication in Keith’s memory continues to inspire all of us.
Thank you to Karen Fisher-Nguyen from Team HCCLSM for her outstanding daily walks. She has shared the number of miles, time of each walk, and the average pace on her personal page each day this month. Karen continues to share her progress on Facebook and also her personal journey with Alpha-1. She has included her weekly infusions of augmentation therapy and increased awareness on Alpha-1 and plasma donations.
The NY/ NJ Support Group led by Team Captain Dan Grimm gathered at the Columbia University A1F Clinical Resource Center (CRC) to support the Alpha-1 Awareness Month. Dr. Monica Goldklang, CRC coordinators, and lab personnel joined the walk along with two additional Alpha-1 patients and a caregiver. Dr. Jeanine D’Armiento supported the walk’s efforts and promoted awareness each and every day of November (and all months of the year). A heartfelt thank you to everyone who came together to support awareness and research in the NY /NJ region, the group has more than doubled their fundraising goal.
Oregon Alphas led by Team Captains Natasha Durant & Mary Chilton together with Dr. Alan F. Barker took place in Mulino, Oregon. Support Group Leaders Natasha and Mary teamed up again this year, walking with Dr. Alan Barker, professor of pulmonary medicine at Oregon Health & Science University (OHSU) and long-time Alpha-1 clinician, researcher, and advocate. Dr. Barker generously matched donations up to $2,000 on this walk page to double the impact for the Alpha-1 community. The support group met at Clackamas Community College and continued walking together through November. This year’s walk raised an impressive $3,795 in support of Alpha-1 awareness and research.
Motivated by Malia led by Team Captain and mom Kara Hodges from League City, Texas came together in a beautiful 2.2K walk around The Lakes at South Shore in League City in honor of Malia. Participants were encouraged to walk, run, hop, skip, crawl, ride a bike, scooter or rollerblade to make it 1.4 miles. Even four-legged friends were invited to join the fun! More than 30 family members and friends joined in love, support and hope for a cure for all those living with Alpha-1. Thank you to Kara and Brian Hodges for advocating for our youngest Alphas and having their voices heard!
Breathe Easy led by Team Captain Lisa Kosak from Vero Beach, Florida continued her long-standing tradition of gathering friends to play cards and raise awareness for Alpha-1 each November. Lisa, a double-lung transplanted Alpha, has been walking and biking every day this month while sharing her progress and raising awareness on her social media account.
Suzanne M. Trapani, RN a former Support Group Leader, walked proudly in Houston, Texas this weekend in her purple Alpha-1 shirt continuing her legacy of support, education, and leadership.
Walkin’ on the Streets of Bakersfield for Alpha-1 led by Team Captain Eric Butcher from Bakersfield, CA
Eric and his group postponed their walk due to weather conditions, a ticketed city event, and travel concerns for participants, but they continued to push forward with fundraising efforts. They have already surpassed their original goal and are now aiming for $750. Eric and Leslie completed a nighttime walk, proudly wearing their Alpha-1 shirts.
Alpha-1 Mainers led by Team Captains Brian Pelletier and daughter, Amber Pelletier | Maine Support Group. The New England Alpha-1 community showed up strong this week as the Pelletier’s and their support group gathered for the Thanksgiving weekend walk.
Team Tom Mulholland led by Team Captain Niveen Mulholland will be walking over Thanksgiving weekend. Niveen and her family walk in loving memory of Tom (1960-2022), a devoted husband, father, brother, and uncle. Tom was known for filling his home with music, hosting family, and cheering on his children in everything they pursued. The family is also honoring Tom through a special birdseed bag giveaway. Tom was a proud Cardinal during his time at Catholic University.
Thank you to every team, captain, supporter, and walker who continues to make this Virtual Walk powerful and meaningful. Your steps, stories, donations, and dedication bring us closer to a future with better treatments and, one day, a cure.
