Miami, October 30, 2020 – Each year, the Alpha-1 Foundation recognizes November as Alpha-1 Awareness Month in order to raise awareness for Alpha-1 Antitrypsin Deficiency (Alpha-1) around the United States.
This special month is commemorated by the wide variety of activities that take place by the community to increase knowledge about this genetic condition that affects an estimated 120,000 people in the United States, with only about six percent being accurately diagnosed.
While raising awareness for Alpha-1 is a continuous effort, Alpha-1 Awareness month is a special opportunity to dedicate 30 days of awareness-focused activities and initiatives, where members of the Alpha-1 community can share their stories, as well as some of the challenges they face on a daily basis.
The Alpha-1 Virtual Walk is an annual activity that is carried out in conjunction with Alpha-1 Awareness Month, where Alphas and their families can raise awareness and funds for Alpha-1 research in their own unique way. Participants can create their own team and use the Strava app to record their miles and raise money directly on the platform. For more on the Virtual Walk and how to get involved or donate, visit http://give.alpha1.org/VW2020.
This also provides an opportunity to advocate for specific issues that affect the Alpha-1 community, such as access to care and improving detection.
Early this year, the Alpha-1 Foundation was scheduled to convene an Alpha-1 Hill Day in Washington D.C to meet with elected officials to discuss priorities pertinent to the Alpha-1 community. Due to the onset of the COVID-19 pandemic, the Alpha-1 Foundation has shifted to a Virtual Lobby Day, which will occur on November 14. Alpha-1 advocates will have the opportunity to meet with their elected officials and their staff via video conferencing software, which enables them to effectively advocate for Alpha-1 from the safety of their own home. Click here to register: https://www.alpha1.org/calendar/virtual-alpha-1-lobby-day/
The Foundation will share important Alpha-1 facts and ways to get involved with Alpha-1 awareness efforts through its social media channels (Facebook, Instagram, & Twitter) as well as on its website throughout the month. The Foundation has also developed a toolkit that is loaded with information and content that individuals can use to participate in the awareness campaign. Using the hashtag #Alpha1Awareness, and #A1FVW20 for virtual walk posts, users can help expand the reach and message of the Alpha-1 community.
Jonathan “Money Maker” Maidment, an Alpha who was diagnosed at the age of 10, is hiking the Continental Divide in support of Alpha-1 Awareness, raising tens of thousands of dollars for Alpha-1 research in the process. Maidment looks to achieve the Triple Crown of Hiking, the rare distinction given to those who hike the Appalachian Trail, the Pacific Crest Trail, and the Continental Divide Trail. He regularly updates his followers via his official Facebook page, facebook.com/hiking4acure, where he uploads photos, videos, and status updates on his journey, and uses the hashtags #Alpha1Awareness and #Hikingforacure.
You can join our efforts! To help you get started, the Foundation has created free downloadable materials to print, share on social media, and email. Let’s increase Alpha-1 awareness together. To learn more about Alpha-1 Awareness Month and to access the Foundation Digital Awareness Toolkit section with images, banners, email signatures, among other materials, go to www.alpha1.org/awareness.
About the Alpha-1 Foundation
The Alpha-1 Foundation, founded in 1995, is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by the condition worldwide. The Foundation has invested over $81 million to support Alpha-1 research and programs at 116 institutions in North America, Europe, the Middle East, and Australia.
For more information, visit www.alpha1.org.
Contact: Jeanne Kushner
Director of Communications & Public Affairs
(877) 228-7321, ext. 204
jkushner@alpha1.org
