2023 Alpha-1 Awareness Month: Week 4 Highlights

November Alpha-1 Awareness Month was a huge success. The Alpha-1 Community has officially reached and surpassed its 2023 fundraising goal. Together, the community has raised over $94,000 to help find a cure for Alpha-1. Over the month over 885 walkers on 75 teams turned the nation purple and “Made their Move for Alpha-1”.

Small decisions can make a big impact. Whether your move was posting about Alpha-1 on social media, creating a team and fundraising for the Alpha-1 Virtual Walk or signing up for the Alpha-1 Research Registry to help move research forward –you made an impact for the entire Alpha-1 community. 

We would like to thank each team captain, walk participant, and donor for their incredible efforts to make this the largest Alpha-1 Virtual Walk to date.

Congratulations to the top three fundraising teams!

Anita SellersTeam Arkansas Friends led by Captain Anita Sellers lands in first place again this year raising over $12,580. Anita walks in memory of her late husband, Keith, and for her family.  Keith was an Alpha that passed away in October of 2020. “I was remembering the first year I did the Virtual Walk, Keith said, “Baby doll, if you walk that distance in 30 days, I will give you $100”. That $100 went with our total and that is how I started walking 150 miles in 30 days each year and got friends to also donate,” said Anita.

Anita has raised more than $70,000 for the Alpha-1 Foundation, she relies on her support network of family and friends from Russellville, Arkansas. Anita has many forms of fundraising throughout November. She started the “Change for a Change Jar” where she collects loose change for a cure. Anita, with the help of her friend, Heather Steuber, handmake a University of Arkansas Razorback themed quilt with signatures of all the college’s football coaches. This raffle has raised over $5,100 towards her fundraising goal. “I wish Keith was here to see how generous our friends and family are on his behalf to help find a cure!” Thank you to Anita, her daughter, Shantay and son, Jared for their amazing efforts!

Congratulations to Melanie and Craig Hamilton hosted Utah Rocks for Alpha-1” coming in second place for their awareness event on Saturday, November 18th at Bobo’s Revenge in Spanish Fork, Utah raised over $6,700. This rock concert joined over 200 people including his son-in-law’s classic rock band. The rain finally stopped, and people came from hundreds of miles away to support this great awareness event. The event raised dollars from ticket sales, a silent auction, raffle and t-shirt sales. Thank you also to DC Young, local support group leader.

“We had many businesses and individuals make donations on the event page and donate raffle prizes. Raffle tickets were sold pre-event and throughout the event. Everyone had a great time and is excited to attend next year’s event. So, God willing, we will host Utah Rocks for a Cure 2 next year!”, said Craig.

Shout out to third place Team Mulholland Niveen Mulholland that walked in Gaithersburg, Maryland over the weekend in memory of her husband, Tom, for his second-year anniversary. Thank you to the Mulholland Family for your participation and for helping find a cure! Together they raised $5,080.

Teams “Making their Move for Alpha-1” in Week 4 of Awareness Month:

  • Bailey Family 15 and Marlyin Bailey is walking on my treadmill at home and so far, has walked 38 miles and plans to do more this next week with the support of her whole team.
  • Mindi Smith of Team Smith has participated in Virginia Beach for over five years in the annual walk.
  • Team Captains Lauren Herrin and John McCormick walked with Team JHL all month long in Boulder, Colorado and Georgia. Lauren’s dog, Mr. Boston joined them on their walks for the cure! The Team is walking in memory of Lauren’s dad who passed away in 2006 from Alpha-1.
  • Team Captains Deborah and Tony Labud have been walking and biking all month long in Micanopy, Florida representing Team Together We Can!
  • Team Captain Hillary Fisher from Team Natalie’ZZ Squad from Easton, Pennsylvania have been participating in the Virtual Walk for over five years. They walk every Thanksgiving weekend with the family in honor of little Natalie.
  • Shout out to Team Captain Steve Buss from Team Little Blue Busses in Ary, Nebraska for participating in his first Virtual Walk! The team’s name comes from the street they live on “Little Blue River” and his last name.
  • Team Captain Chatti Ellason walked with her colleagues in Arlington, Texas representing Team Ellason. They set up an Alpha-1 Booth in the hallway of her office.
  • Team Captain Melissa Westfall from Team Breathin’ Heathens from Muncie, Indiana walked in honor of her 30th birthday.
  • Thank you to Plasma Protein Therapeutic Association (PPTA) for forming a team and walking in support of ALpha-1 awareness and plasma awareness in Annapolis, Maryland.
  • We are grateful for the dedication of Inhibrx walking with their team in San Diego, California!

Leadership and staff from the Alpha-1 Foundation met at the Grifols offices at Research Triangle Park in Raleigh, North Carolina on the last day of awareness month. Thank you to Chris Healy, President at Grifols Shared Services North America and the entire Grifols Team for your continued support this month and all throughout the year! We are grateful for your dedication to our mission!

We wrapped up awareness month with two phenomenal events on December 1st and December 2nd. On Friday, Alpha-1 Advocates from around the country joined together in Raleigh for an Advocacy Workshop and Training. Thank you to our incredible volunteer advocates for their dedication: Kari Black, Erin Carr, Daniel Grimm, Jon Hagstrom, Peg Iverson, Jennifer Jopp, Lisa Kosak, Daryl Kunz, Siobhan Lestina, Richard Lovrich, Joseph Masnack, Jason Medeiros, Diana Patterson, Christine Redshaw, Fred Walsh and DC Young. Thank you also to our industry partners for their participation – AlphaNet, CSL Behring, Grifols and Takeda.

To date, H.R. 4438 “The John W. Walsh Home Infusion Bill has obtained 34 co-sponsors. In the final weeks of awareness month, the following members of Congress have signed on: Representative Scott Peters (California), Representative Yadira Caraveo (Colorado), Representative Andy Kim (New Jersey), Representative Mike Thompson (California), Representative Josh Gottheimer (New Jersey) and Representative Jeff Van Drew (New Jersey).  Join Alphas, caregivers and members of the Alpha-1 community in this important and timely campaign. Contact Jeanne Kushner, Director of Communications and Public Affairs at jkushner@alpha1.org to get involved and have your voice heard.

The Raleigh Alpha-1 Education Day on Saturday joined over 120 attendees in person for an informative day of learning and networking. Presentations were made by Scott Santarella, President & CEO of the Alpha-1 Foundation, Dr. Hector Sanchez and Dr. M. Doug Lee, Pulmonary and Alpha-1 Specialists at Wilmington Health,  Dr. Bradley Drummond, Director of the Alpha-1 Clinic at University of North Carolina at Chapel Hill, Dr. Charlie Strange, Medical Director of AlphaNet, Miriam O’Day, Senior Policy Advisor at the Alpha-1 Foundation, and Dr. Barbara LeVarge, Associate Director of the Pulmonary Hypertension Program at the University of North Carolina at Chapel Hill. During lunch, attendees wore their purple shirts and shared in the celebration closing out an incredibly successful Alpha-1 Awareness Month.

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