November 15th marked the halfway point of 2021 Alpha-1 Awareness Month and this year’s campaign shows no signs of slowing down!
Last Wednesday, new and veteran Alpha advocates came together on ZOOM for the 2021 Fall Virtual Alpha-1 Lobby Day to make their voices heard in front of key legislators. Joined by staff members of the Alpha-1 Foundation, advocates from around the nation participated in over 50 appointments to discuss the importance of permanent home infusion benefits for the Alpha-1 community. The John W. Walsh Alpha-1 Home Infusion Act, legislation named for the Foundation’s late Founder and President, seeks to make home infusions a permanent benefit under Medicare Part B. The first goal of the lobby day was to obtain co-sponsors for a House version of the bill, which is currently sponsored by Representative Maria Elvira Salazar (R-FL), and a lead sponsor for a senate version of the bill. Additionally, advocates asked representatives for their sponsorship on a letter to the Centers for Medicare and Medicaid Services (CMS) director. This draft letter would work to place CMS on record as to the roadblocks in implementing the temporary home infusion benefit in the Alpha-1 Community.
Furthermore, the Foundation would like to thank everyone who has reached out to their local and state leadership to get November officially recognized as Alpha-1 Awareness Month. In response to his request, Alpha Brian Pelletier recently received a letter from Maine Governor, Janet Mills, encouraging her constituency to learn more Alpha-1 and participate in Alpha-1 Awareness Month. Click here to read the letter. We were proud to acknowledge and honor our Alpha-1 veterans on social media on Thursday, November 11th, Veteran’s Day.
For the first time ever, the Foundation is excited to be doing a one-day takeover of the Immune Deficiency Foundation’s social media accounts for the Plasma Hero campaign to promote plasma and alpha-1 awareness. From 9:00 am to 9:00 pm today (November 16th), the Alpha-1 Foundation will be posting on Facebook and Instagram through the handle @beaplasmahero to teach others more about Alpha-1 Antitrypsin Deficiency and how plasma donations are lifesaving to the Alpha-1 community. Be sure to tune in and help raise awareness by sharing the posts using the hashtag #Alpha1Awareness!
It is not too late to form a team, join a team or register as an individual for the 2021 Alpha-1 Virtual Walk. The Foundation counts on the Alpha-1 Community to help raise the much-needed awareness and funds to find the cure for Alpha-1. Click here to register.
Over the weekend, the Smith Family walked in Virginia Beach, California. The Smiths have been participating in the annual Virtual Walk for the past four years and have made it a tradition to walk in a cool location the week before Thanksgiving.
Congratulations to Luciano and his mom, Melissa, from New York that also walked last weekend. This is their first time participating in the Virtual Walk and they were excited to use all the Alpha-1 swag that was delivered in the “Surprise Virtual Walk” boxes.
A BIG shoutout to “Team Steve” and their BIG team from West Monroe, Louisiana. Hosted by Memory Whitlock, this walk has taken place for the last six years in memory of her late husband, Steve. Team Steve has raised over $3,500 to date and has 35 friends and family supporting their efforts. Thank you ALL for your dedication to the Alpha-1 mission.
The Alpha-1 Foundation continues to encourage everyone to walk, raise funds and share great pictures on social media. Be sure to use the hashtag #Alpha1Awareness! Please send any Virtual Walk photos to firstname.lastname@example.org for a chance to win cool prizes.