November Alpha-1 Awareness month successfully obtained its goal and raised awareness for Alpha-1 Antitrypsin Deficiency around the United States. November 2020 was a unique year, making all annual awareness month activities and initiatives virtual while still allowing Alphas to share their stories and generate awareness. The Foundation used its social media channels, (Facebook, Instagram and Twitter) as well as the website, (www.alpha1.org) throughout the entire month to engage the community in its ongoing awareness efforts. The Awareness Toolkit was available and used throughout the entire #Alpha1Awareness campaign by Alphas, friends and family to expand the reach and message of the Alpha-1 community.
The Alpha-1 Virtual Walk allowed participants to create their own teams and used the Strava app to record their miles and raise money directly on the platform. Even though 2020 was a bit different, we were still able to unite virtually and spread awareness and funds to help find a cure for Alpha-1. This year and outstanding 842 participants from 86 teams surpassed this year’s goal and raised $82,000! The hashtag #A1FVW20 was used throughout the campaign by walkers across the country.
On November 19th, Jonathan “Money Maker” Maidment, an Alpha who was diagnosed at the age of 10, achieved the Triple Crown of Hiking in efforts to support Alpha-1 Awareness and raise funds for Alpha-1 research in the process. The Triple Crown of Hiking refers to the three major long-distance hiking trails in the United States: the Appalachian Trail (AT), the Pacific Crest Trail (PCT) and the Continental Divide Trail (CDT). The Triple Crown is a grueling endurance challenge taking place over several years, as hikers trek nearly 8,000 miles across 22 states with one million feet of cumulative elevation gain. It is estimated that only 600 people worldwide have completed the Triple Crown and it is believed that Jonathan is the only person with rare disease to complete this milestone.
After hiking the Continental Divide for the past five months, Maidment adds this last hike of the Continental Divide Trail to complete this incredible feat, an arduous journey consisting of 3,100 miles along the Rocky Mountains and crossing Montana, Idaho, Wyoming, Colorado, and New Mexico.
“You are why I did all of this. Obviously, I love to hike and backpack, and these hikes have been a dream of mine for years but raising money for the Foundation was just so fulfilling. I can’t imagine doing these hikes without the Foundation being involved.”
In total, Jonathan Maidment has raised over $250,000 since the creation of Hiking for a Cure. and spread an incredible amount of awareness. Proceeds from the fundraiser have been dedicated to finding a cure for Alpha-1. Visit his Facebook Hiking for a Cure page documenting his three hikes and show your appreciation of Jonathan’s extreme efforts.
The Alpha-1 Foundation held its first ever Virtual Alpha-1 Lobby Day on Tuesday, November 17, 2020 in order to bring awareness to three prominent issues that affect the broader Alpha-1 community. Alpha-1 advocates were given the opportunity to meet with the offices of their local elected officials to tell their Alpha-1 stories and provide a face to the issues and proposals being presented.
“I have learned so very much from my inclusion in the lobby day, lessons that are already informing my thoughts and efforts regarding Alpha-1 advocacy,” said Richard Lovrich, an Alpha-1 patient advocate. “The biggest takeaway was that every beneficial aspect of healthcare from the consumer point of experience was fought for, and when it comes to healthcare legislation, nothing “just happens”. I am proud of Miriam O’Day, our foundation and each and every Alpha fighting on the front lines for patients’ rights.”
Alphas from across the 50 states were encouraged to reach out to the local and state government officials to obtain proclamations declaring November as Alpha-1 Awareness. We are grateful for this ongoing commitment that is made each year by our Alphas including our Support Group Leaders and members.
“I enjoy dedicating time leading up to and during Alpha-1 Awareness month assisting with proclamations. I am passionate about helping other Alphas see how they can generate awareness in their local cities and states to ensure that government officials know about our rare disease,” said Lisa Kosak, Alpha-1 patient. “Government offices are here to learn how they can make a difference in their constituents’ lives and the large-scale impact of knowledge generated from the outreach is so powerful. Obtaining proclamations is a great way to get involved in Alpha-1 awareness, even if you are new to the community!”
November was a huge success because of the dedication of this incredible Alpha-1 community. Not even a pandemic will stand in the way of Alphas having their voice heard and raising awareness.