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Virtual Walk 2019: 30 days of awareness

Dec 12, 2019 | News

November has been a busy month for Alphas around the United States raising awareness about Alpha-1 Antitrypsin Deficiency (Alpha-1). For 30 days, in 34 states, friends and family supported one strong mission to find a cure. The community set up 72 teams to total 970 walkers who walked, ran, or found their unique way to raise awareness and over $86,000 community dollars.

November has been marked as Alpha-1 Awareness Month to increase knowledge and spread awareness about Alpha-1 with several activities across the United States. You can read the official press release here.

The Virtual Walk is a part of the Building Friends for a Cure (BFC) program, and was created by the Alpha-1 Foundation to make new friends and nurture those friendships throughout the year, because we cannot do it alone, you are all needed!

Participants across the country wore their “Courage to make a Difference” purple t-shirts with the proud lion on the front. The weather during the fall season is so diverse in the U.S. and we loved to see how each group added their own special touch to their walk. The temperatures dropped around the country as the month went on but the momentum of Awareness Month only got stronger.

Thank you to our top 10 teams:

  • Arkansas Friends
  • Team TY-GA
  • Los Angeles Alphas
  • Atlanta Support Group
  • Twin Cities MN
  • Team Cadwgan
  • Teaming up Utah for Alpha-1 Awareness
  • Team Steve
  • Team Harrison
  • Philly Walk

Thank you for being part of our social media activities to spread awareness. In November, a total of 91 Facebook posts reached over 165,000 pairs of eyes and generated over 12,000 actions. Tweets saw a total of 47,000 views, and Instagram reached over 5,000 people and generated over 51,000 views, overall. Thank you.

“Team TY-GA,” for Tyler and GA for Grandma, led by team captains Jena and Ben Frye, had over 100 people come together at Red Devil Stadium, in St. Clairsville, Ohio, for their first ever virtual walk. They were featured on the local radio and were able to connect with other local Alphas to join them for this great day. Raising over $7,000 at their inaugural walk.

“Team Steve” hosted its 4th Annual Virtual Walk in memory of Steve Whitlock. Led by team captain Memory Whitlock, over 50 walkers honored the Steve’s memory with a beautiful celebration. Steve’s family and friends joined at Kiroli Park in West Monroe, Louisiana.

Steps of Hope, in sunny Gainesville, Florida, led by team captain Deb Labud, joined 30 incredible walkers and was featured in the Gainesville Times. Diagnosed in 1991 at age 36, Deb spent many years misdiagnosed and by 1995 she was on oxygen 24/7. She was put on the transplant list in 1997 and received a single-lung transplant on Thanksgiving Day 2001.

This walk celebrates the 18th anniversary of her first transplant and one year since second lung transplant. Deb has a lot to be thankful for this November. Deb has worked to raise awareness and money for Alpha-1 to find a cure and for research. “I don’t want my grandkids or any other family members to go through what I have, and I want the same for all of the other families with Alpha-1,” she said.

Arkansas Friends, in Russellville, Arkansas, led by team captain Anita Sellers, completed 150 miles in 30 days. They filled their change jars all year long, totaling $1,442.68, and continued fundraising through November. This was fun and easy way to spread awareness and raise funds at home or at work for Alpha-1.

Anita’s grandsons added their contribution, too. Parker included a special donation from his own bank, four precious quarters!

“I cannot begin to tell you how proud I am of my mom and everyone who helped raise money! Her dedication to raising money for research every year is amazing! She beat her goal for the year! I am SO PROUD! We would both love to see the day when no other family has to endure this disease.

“It is amazing to me to see the ripple of one person having a disease and the impact it can have. People donated because of some connection to my dad and our family. People who had never heard of the disease, people who know him or our friends or family, people who know of the disease because someone was diagnosed. It’s amazing.

“Thank you to everyone who helped with the fundraiser in whatever capacity. So very much appreciated. The research that has already been done has allowed me to have many more years with my dad than he was ever supposed to have… for that I will never be able to say thank you enough,” said Shantay Bondoni, Anita’s daughter.

For the last virtual walk event for 2019, Siobhan Lestina walked in a 5K in O’Fallon, Missouri. The virtual walk pushes us just a little further and this was how Siobhan showed how strong she was. Despite being nervous, she crossed that finish in one hour, 14 minutes and 32 seconds.

Alphas shared their stories on social media, doing a Virtual Walk, requesting  proclamations from elected officials, or shared Alpha-1 awareness images. Hashtags were used throughout the month #VW19 #Alpha1Awareness to generate awareness.

During the entire Alpha-1 Awareness Month, people who have Alpha-1 and those who support them held educational events, participated in fundraisers for research to find a cure, and shared their stories about the trials and triumphs of being an Alpha.

Thank you.

The BFC program was designed to generate awareness, raise funds for research and related programs of the Foundation, extend our geographic reach, and foster stronger links between the Foundation and the community it serves.

For more information on organizing a fundraising event or activity, please contact Angela McBride at (877) 228-7321 ext. 233, or amcbride@alpha1.org.

Building Friends for a Cure program is supported by AlphaNet, CSL Behring, Eversana, Grifols, and Takeda.

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