A121 Fall 2023 Magazine

Vol. 21, No. 2 • FALL 2023

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A MAGAZINE OF THE ALPHA-1 FOUNDATION

ALPHA- -TO-ONE Practical advice, personal experiences and

pertinent news for people touched by ALPHA-1

Best conference ever

#A1NC23

Can't wait for next year!

MESSAGE FROM LEADERSHIP

T

he Alpha-1 Foundation is back in full swing, and we couldn't be more thrilled. We had the pleasure of gathering in person in Dallas, Texas, for the Alpha-1 National Conference in June. This marked our first in-person conference since 2019, and the theme, "Blazing the Trail Together for Alpha-1," perfectly captured the spirit of discovery and innovation that the Foundation has championed for nearly three decades.

The conference was a resounding success, inspiring all participants to contribute to our mission. At the heart of our mission is the impact we make in the lives of Alpha-1 patients. We believe that we are on this journey together—you need us, and we need you to accomplish our shared mission.

In May, during the American Thoracic Society (ATS) Conference in Washington, DC, we hosted the 2023 Grant Awards Reception. We are delighted to award significant grants to deserving recipients, a testament to the Foundation's commitment to being a world leader in funding research for Alpha-1. Our investments in basic science and translational research provide hope, and it's vital that we celebrate our achievements in this area.

We're proud to announce the launch of the revamped Alpha-1 Foundation website, designed with the Alpha-1 community in mind. The redesigned alpha1.org features a simplified menu for easy navigation, an integrated and searchable video library with recent educational presentations, information on clinical trials, upgraded map features to help you find Alpha-1 Specialists or Support Groups nearby, and much more. Our goal was to create a highly functional, informationrich resource offering a user-friendly experience for all visitors, aligning our website with contemporary platforms for better functionality.

The Alpha-1 Research Registry continues to offer patients an opportunity to be part of the solution. Your involvement empowers us to expedite trial screening and advance the field of Alpha-1 research.

Clinical trials and the role of Alpha-1 patients are instrumental in bringing forth novel therapies for both lung and liver-affected patients.

Find out how you can join the registry on the back cover of this magazine.

Exciting news on the legislative front—the John W. Walsh Home Infusion Bill has been reintroduced in the 118th Congress. Learn more on page 10 about how you can help put your state on the map and support this vital bill.

Looking ahead, we invite you to join us this fall at our events.

Throughout September, the Riding for a Reason campaign will take place across the United States. For over 26 years, Alphas have united at Escape to the Cape in Massachusetts for a bike trek to raise awareness and funds for Alpha-1. In November, join us for Alpha-1 Awareness Month, featuring virtual walks and different ways you can raise awareness of Alpha-1. Giving back has never been easier through our Building Friends for a Cure (BFC) program, which empowers patients to join forces and contribute to our fundraising efforts. Together, let's work toward the ultimate goal — a cure!

Thank you for being an essential part of our Alpha-1 community and for your unwavering support of our mission.

Sincerely,

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ALPHA- -TO-ONE Practical advice, personal experiences and pertinent news for people touched by Alpha-1, their families and friends VOL. 21, NO. 2 (Fall 2023) Published by the Alpha-1 Foundation 3300 Ponce de Leon Blvd., Coral Gables, FL 33134 (877) 2 CURE A1 (228-7321) www.alpha1.org Alpha-1 Foundation Board of Directors Executive Committee Jon Hagstrom*, Chair Fred Walsh*, Vice Chair Peg Iverson*, Secretary Kenneth A. Irvine +, Treasurer Virginia Clark, MD, Physician-Director Members Mark L. Brantly, MD Jennifer Jopp* Ann Knebel, PhD, RN Darrell N. Kotton, MD Noel G. McElvaney, MC, MCh, BAO, FRCPI, FRCPC Faron Schonfeld* Catherine Vernon* Martin R. Zamora, MD, Director Emeritus Alpha-1 Foundation Executive Staff Scott Santarella, President & Chief Executive Officer Mark B. Delvaux, Chief Financial Officer Andrew A. Wilson, MD, Scientific Director Robert A. Sandhaus, MD, PhD, FCCP, Clinical Director Alpha-1-To-One Editorial Board Gordon Cadwgan, PhD*;Erin Carr+; Catriona Garry*; Jon Hagstrom*; Andrew A. Wilson, MD; William J. Martin II, MD: Robert A. Sandhaus, MD, PhD, FCCP; Patricia Tew*; Bruce C. Trapnell, MD Managing Editor Jeanne Kushner Contributing Editors Gennesis Corado; Cathey Henderson; Richard Lovich; Angela McBride; Shakira Molet; Miriam O’Day; Alexis Artiles Ojeda; Randel Plant; Linda Rodgriguez ALPHA-1-TO-ONE is published by the Alpha-1 Foundation with support from its advertisers. No part may be reproduced in any form by any means without prior written permission of the Alpha-1 Foundation. The contents are not intended to provide medical advice, which should be obtained directly from a physician. The Foundation is not responsible for the accuracy of information expressed in advertisements in this publication.

Advertising: For advertising inquiries, please contact Angela McBride, Senior Director of Corporate Relations at (877) 228-7321 ext. 233, or amcbride@alpha1.org.

Letters to the Editor: Please send letters to the editor to Jeanne Kushner, Director of Communications & Public Affairs, at jkushner@ alpha1.org. Letters may be edited for clarity and length.

1 ALPHA-1 FOUNDATION

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide. *Diagnosed with Alpha-1 Antitrypsin Deficiency + Diagnosed Family Member

Scott Santarella President & CEO 2

1-877-2-CURE-A1 (228-7321)

Vol. 21, No. 2 • Fall 2023

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A MAGAZINE OF THE ALPHA-1 FOUNDATION

­­­Inside ­­­ALPHA- -TO-ONE #A1NC23

Features SPOTLIGHT

The 2023 Alpha-1 National Conference ............................................................... page 4 Can't wait for next year!

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ALPHA LIFE

Alpha Empowerment Hour .............................................................................................. page 6 FRONTIERS

Alpha-1 Foundation 2023 Grant Awardees....................................................................... page 7 IN YOUR INTEREST

Reintroduction of the John W. Walsh Home Infusion Act in the 118th Congress............ page 10

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ASK THE ALPHA DOC

What to Ask your Healthcare Provider ............................................................................ page 13 ALPHA-1 KIDS

A Mother's Journey: Navigating Alpha-1 with Julie Spilker ............................................ page 21 ALPHA-1 COMMUNITY

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Step Forward for Alpha-1 Denver Walk & Picnic ........................................................... page 17 From Diagnosis to Advocacy, How One Woman Found Strength in Connecting with Others ............................................................................................... page 22 CALENDAR OF EVENTS

2023 Meetings & Events .................................................................................................. page 27

STAY CONNECTED

21 fb.com/alpha1foundation Alpha-1 Foundation

www.alpha1.org

@AlphaFriend

@alpha1foundation­­­

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SPOTLIGHT

The 2023 Alpha-1 National Conference

T

he highly anticipated first in-person Alpha-1 National Conference in four years, themed “Blazing the Trail Together for Alpha-1,” took place in Dallas, Texas from June 9th to 11th. This year’s conference combined the best elements of in-person and virtual participation to ensure accessibility and flexibility. Over 300 people including Alphas, friends, family, caregivers, staff, and industry representatives, gathered in-person to connect, learn, and share experiences.

The conference aimed to create a full interactive experience that combined educational sessions with moments of joy and camaraderie. The conference had over 600 attendees total, including virtual participation.

This year’s theme is a tribute to the pioneering spirit that John W. Walsh, Susan Stanley and Sandy Lindsay shared in their quest to find a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1),” said Scott Santarella.

“We are all inspired by their passion and commitment through their empowered, collective vision and as President and CEO I feel a huge responsibility to carry on their legacy and help finish what they started with the help and dedication of the entire Alpha-1 community.”

Day 1 of the conference offered two tracks: one for “Alpha-1 beginners” including a conference orientation for first time attendees and Alpha-1 101s, and one for returning attendees with a focus on Alpha-1 research.

Attendees later had the opportunity to attend the “Emerging Therapies in Alpha-1” presentation, moderated

by Dr. Andrew Wilson and Dr. Virginia Clark. Six companies presented their latest research in the field.

The Alpha-1 Foundation expresses its appreciation to Beam Therapeutics, BioMarin, Inhibrx, Novo Nordisk, Vertex and Wave Life Sciences for their active participation and contribution to the conference.

A new addition to the conference this year was the Alpha-1 Research Registry Reception, celebrating the enrollment of 3,000 participants. This reception facilitated meaningful discussions and interactions focused on how to be part of

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the cure. Dr. Jeanine D’Armiento, Principal Investigator for the Registry and Co-Principal Investigator of the Alpha-1 Biomarkers Consortium (A1BC) made remarks about the milestone for the registry and shared how important participation is to help patients get connected to Alpha-1 related studies and clinical trials. The reception fostered connections among researchers, participants, and the Alpha-1 community, strengthening the collaborative spirit of the Foundation.

Friday evening, attendees were treated to a Western Party that included line-dancing lessons. Everyone wore their best western attire and received an Alpha-1 Foundation cowboy hat and purple bandana to get in the spirit. This activity provided a fun break and allowed participants to connect and enjoy each other’s company.

Day 2 kicked off with inspiring opening remarks and presentations by Scott Santarella, Alpha-1 Foundation President & CEO and Jon Hagstrom, Alpha-1 Foundation Chair of the Board of Directors, setting the tone for a day of collaboration and learning. Mr. Hagstrom shared his journey as a ZZ Alpha, his double lung transplant and his inspiration to be involved.

One of the highlights of the conference was the “Alpha Empowerment Hour” where Alphas, parents and caregivers Natasha Durant, Eric Butcher, Kari Black, Kathi and Dan Coffin, and Richard Lovrich shared what inspires them and keeps them going. A Common threads in their stories were that being a part of the Alpha-1 community empowers them, the appreciation of fellow Alphas, the inspiration from each other’s stories, the lessons learned and the friendships that are built.

1-877-2-CURE-A1 (228-7321)

With three tracks running simultaneously on Saturday afternoon, participants had the opportunity to choose sessions that aligned with their interests and needs including but not limited to General Patient Care, Genetics, Regenerative Medicine, Integrative Therapies, Transplant, Public Policy and Alpha-1 Kids Care. The diverse tracks ensured that there was something for everyone, providing a comprehensive and wellrounded experience for everyone.

conference. The conference presentations are available through the Foundation’s Video Library, ensuring that the information can be accessed by the community at any time.

On the final morning of the conference, the community came together to honor and remember the Alphas who have passed away in the annual Alpha Angels Memorial Service. The service was led by Fred Walsh and Dan Coffin. Both in-person and virtual participants joined celebrating the memories of those lost.

The Alpha-1 National Conference highlights the collective commitment to advancing research, raising awareness, and providing support for individuals and families affected by Alpha-1, bringing hope and unity to the community.

Through a simplified, informative and interactive virtual platform, the Alpha-1 Foundation ensured that virtual attendees had access to the same enriching content as those attending in person. All of the presentations were live streamed into the virtual auditorium in real time. Resources were made available to include in the briefcase feature with the ability to download materials. This inclusive approach exemplified the Foundation’s commitment to accessibility and flexibility, enabling a wider audience to benefit from the valuable insights shared during the

www.alpha1.org

Thank you to our esteemed presenters: Dr. Mark Brantly, Dr. Michael Campos, Erin Carr, Dr. Virginia Clark, Dr. Jeanine D’Armiento, Dr. Monica Goldklang, Dr. Dana Goldner, Lorrinda Gray-Davis, Dr. Nitika Arora Gupta, Jon Hagstrom, Cathey Henderson, Dr. Joseph Kaserman, Dr. Darrell Kotton, Jennifer Noonan, Miriam O’Day, Jill Pollander, Dr. Robert Sandhaus, Scott Santarella, Dr. Charlie Strange, Dr. Jeffrey Teckman, Pam VanScoy and Fred Walsh.

This event was made possible by the generous support of the many Foundation sponsors. The Foundation extends its gratitude to Platinum Sponsors: AlphaNet, CSL Behring, Grifols, Takeda and Vertex; Gold Sponsor: Eversana; and Silver Sponsors: Accredo and CVS Specialty. Their unwavering commitment to the Alpha-1 community is instrumental in driving progress and improving the lives of individuals affected

by Alpha-1. 1 ALPHA-1 FOUNDATION

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ALPHA LIFE

Alpha Empowerment Hour

O

ur success starts with you, the patient, the Alpha! Everyone associated with the Alpha-1 Foundation appreciates your support of our mission to find a cure for Alpha-1. More importantly, we admire your courage and we are inspired by your resiliency. Over the decades we have learned the value and importance of engagement, and know that as you hear from engaged patients, you become empowered patients.

What is patient empowerment?

A process that helps a patient gain control over their own life and increases their capacity to act on issues that they themselves define as important.

Kari Black, Alpha, Building Friends for a Cure (BFC) Fundraiser, Support Group Leader and AlphaNet Coordinator “Advocate and find others to advocate for you.”

Eric Butcher, Alpha, Support Group Leader “Helping myself, by helping others.”

This year, the Alpha-1 National Conference featured an inspiring and timely session focused completely on the journeys different people have in the Alpha-1 community – the Alpha Empowerment Hour. For many, there is nothing more relevant than to hear from empowered patients, what inspires them to remain engaged and what empowers them to make a difference.

The Alpha Empowerment Hour took place after the conference kick-off on Saturday morning. Six amazing individuals joined on the main stage in Dallas to share their unique stories. Each person started by sharing the song that keeps them moving and gives them that extra push when they lose motivation.

Dan & Kathi Coffin- Alpha, Caregiver, Fundraisers “It is all of you who get up every day and strive to advance our cause together...remember, we are stronger together folks. Get involved, each one makes a difference to someone!”

Natasha Durant, Alpha Mom, Fundraiser, Support Group Leader “I may have Alpha-1 but Alpha-1 does not have me.”

Richard Lovrich, Alpha, Advocate, Fundraiser, Volunteer Photographer “When life gives you lemons, you make lemonade.”

A common thread with these stories is that being a part of the Alpha-1 community is empowerment - the appreciation of fellow Alphas, the inspiration from each other’s stories, the lessons learned and the friendships that are built.

Every Alpha should feel empowered to make a difference.

Make an Alpha friend, fundraise for the Alpha-1 community, participate in a research trial, advocate for yourself and the Alpha-1 community, be a trailblazer! 1 ALPHA-1 FOUNDATION

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1-877-2-CURE-A1 (228-7321)

The Alpha-1 Foundation has invested over $92 million dollars towards research at 129 institutions around the world, being the largest funding source for Alpha-1. It is because of the brilliance of our researchers and physicians that we continue to move the needle towards a cure, a cure that will ultimately change lives. Earlier that month, the Grants Advisory Committee (GAC) awarded 10 in-cycle grants to well-deserving applicants totaling over $1.7 million. 40 % are focused on lung research, 40% on liver research and 20% in both areas of study, making a well- balanced research portfolio.

Thank you to the GAC for their outstanding commitment and dedication.

T

he 2023 Alpha-1 Foundation Grant Awards Reception was held on Monday, May 22, 2023 during the American Thoracic Society International Conference in Washington, D.C. The evening joined together over 140 guests including Alphas, pulmonologists, researchers and industry at the historic National Archives Museum to celebrate the recently funded research grants. Guests enjoyed a VIP tour of the Declaration of Independence, Constitution and Bill of Rights in the beautiful rotunda. Thank you to the 2023 Grant Awards Reception sponsors AlphaNet, CSL Behring, Grifols and Takeda.

“One of my primary goals is to bring new, young investigators into the Alpha-1 research community to ensure that we continue to benefit from new ideas and high-quality research for years to come,” said Dr. Andrew Wilson, Alpha-1 Foundation Scientific Director.

www.alpha1.org

“The Alpha-1 Foundation continues to invest boldly, funding the most promising science to accelerate treatments for the underlying causes of Alpha-1 and to find a cure for every person diagnosed with this condition.

The force behind all the success is the Alpha-1 community and the passion is what fuels our shared mission. We have no doubt that together we will move forward to achieve this. Clinical trials in Alpha-1 are at an all-time high and your role is integral in the next steps of our success as we continue to build the Alpha-1 Biomarkers Consortium (A1BC) and the Therapeutic Development Network (TDN),” stated Scott Santarella, President & CEO, Alpha-1 Foundation.

FRONTIERS

2023 Grant Awards Reception

Dr. Andrew Wilson, Scientific Director of the Alpha-1 Foundation made remarks and introduced the recently awarded grantees.

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FRONTIERS 8

Alpha-1 Foundation 2023 Grant Awardees The research grants were awarded in-cycle for basic and translational research and provide funds to encourage the development of new information that contributes to the understanding of Alpha-1.

Adel El Boueiz, M.D. from Brigham and Women’s Hospital, Imaging and Multiomics Analyses of Emphysema Patterns in MM and MZ Smokers

Bibek Gooptu, M.D., Ph.D. from University of Leicester, Structural Studies of Misfolded and Polymeric Alpha-1 Antitrypsin in ERAD and ERLAD

James Irving Ph.D. from University College London, Rational Design of Better Diagnostic Reagents

Lela Lackey, Ph.D. from Clemson University, Misregulation of Polyadenylation During Stress Contributes to A1AT Deficiency Phenotypes

Jungnam Lee, Ph.D. from University of Florida, Mechanisms of a-Defensins Mediated Bacterial Infection in AATD Individuals

Nunzia Pastore, Ph.D. from Fondazione Telethon ETS, Revealing the Role of Lysosomes in the Pathology of the AATDRelated Liver Disease

Carmine Settembre, Ph.D. from Fondazione Telethon ETS, Exploring the Role of FAM134B-MEDIATED ERPHAGY in Alpha-1 Antitrypsin Deficiency

Richard Sifers, Ph.D. from Baylor College of Medicine, Identification of ESLD Prognostic Indicators

1-877-2-CURE-A1 (228-7321)

Congratulations Dr. Emer Reeves from the Royal College of Surgeons in Ireland and Dr. Ariel Curiale from Brigham and Women’s Hospital for pilot and feasibility grants. The objective of the Pilot and Feasibility grants are to provide funds to encourage the development and testing of new hypothesis and/or new methods in research areas relevant to Alpha-1.

Ariel Curiale, PhD, Brigham and Women’s Hospital, AI Approaches to Define Emphysema Progression Risk in PiMZ and PiMS Heterozygous Subjects

Emer Reeves, PhD, Royal College of Surgeons in Ireland, Exploring ProResolving Lipid Complexes to Realize the Full Therapeutic Impact of Alpha-1

The Ab Rees Fast Track Grants were awarded for the first time to four awardees to fund the preliminary work needed to apply for ancillary funding from the NIH or the Alpha-1 Foundation for the A1BC Study. The Alpha-1 Biomarkers Consortium study, funded by the NIH, was created to identify and characterize biomarkers in Alpha-1 that are needed to advance a cure for this disease.

Igor Barjaktarevic, MD, PhD, UCLA David Geffen School of Medicine, Exploring the role of Nasal Transcriptome Bioprofiling A1AT Deficiency

Monica Goldklang, MD Columbia University Irving School of Medicine, Alterations in inflammation and proteases during acute exacerbations of COPD in AATD

Karina Serban, MD National Jewish Health, Denver, Longitudinal biomarker study of diseaseupper airway and plasma metabolomics

J. Michael Wells, MD, MSPH University of Alabama at Birmingham, Molecular Profiling AATD Respiratory Specimens: A Pilot

FOUNDATION To learn more about our Grant Opportunities, please visit alpha1.org/grant-opportunities/ 1 ALPHA-1

www.alpha1.org

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IN YOUR INTEREST

Reintroduction of the John W. Walsh Home Infusion Act in the 118th Congress This successful policy was adopted administratively during the COVID pandemic as a temporary benefit but needs authorization from Congress to continue long-term. This is a patient access problem, and the Alpha-1 Foundation worked with Congress to find a solution facing Medicare beneficiaries who are unable to obtain home infusion coverage through Medicare.

Specifically, the legislation will establish a permanent home infusion benefit in the Medicare Part B program specifically for Alpha-1 patients.

R

eps. María Elvira Salazar (R-FL) and Chellie Pingree (D-ME) have reintroduced the John W. Walsh Alpha-1 Home Infusion Act. (H.R. 4438). If passed, certain Medicare beneficiaries living with Alpha-1 Antitrypsin Deficiency (Alpha-1) would be able to receive essential augmentation infusions at home. John W. Walsh was the legendary founder of the Alpha-1 Foundation. John Walsh’s leadership and passion helped to shape the Alpha-1 Foundation into a successful organization. His perseverance and hard work improved the lives of every Alpha-1 patient in the United States and around the world.

“Access to home-based care reduces healthcare costs while giving people dignity and peace of mind as they receive quality care in their home,” said Rep. Salazar. “I am proud to lead this legislation, which would make life easier for Medicare patients struggling with this rare genetic disease.”

This bill allows Alpha-1 rare disease patients to continue receiving critical in-home infusion treatment covered by Medicare.

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The new Medicare Part B benefit would provide a reimbursement structure for augmentation therapy, intravenous administration kits, and up to 2 hours of nursing services. An Alpha-1 patient who is on Medicare should not have to choose between skipping needed therapy or exposure to a potentially fatal virus which preys on those with pulmonary issues.

“Despite being safe and effective, many immunocompromised Alpha-1 patients couldn’t access important therapies during the pandemic because of barriers to home infusion under Medicare,” said Rep. Pingree. “By making this small but impactful change in Medicare policy, our bipartisan John W. Walsh Alpha-1 Home Infusion Act will ensure home infusions are a permanent benefit for Medicare beneficiaries who suffer from this rare disorder.”

To learn more about the Alpha-1 Foundation’s advocacy efforts, please contact Jeanne Kushner, Director of Communications & Public Affairs at FOUNDATION jkushner@alpha1.org. 1 ALPHA-1

1-877-2-CURE-A1 (228-7321)

IT'S POSSIBLE TO

RAISE YOUR ALPHA-1 LEVELS Prescribed by doctors for 10+ years, GLASSIA® has been proven to help increase Alpha-1 protein levels in the blood and lungs.*

*The effect of augmentation therapy on pulmonary exacerbations and on the progression of emphysema in Alpha-1 deficiency has not been conclusively demonstrated in randomized, controlled clinical trials.

“My pulmonologist recommended GLASSIA as the best option for me.”

Scan or visit glassialiquid.com/getinfo to learn more about GLASSIA and administration options.

—KATHY S. Actual GLASSIA patient for ~2 years

After you and your physician choose a treatment path, OnePath® provides a range of personalized product support services throughout your GLASSIA treatment journey.

For more information, visit www.onepath.com.

What is GLASSIA? GLASSIA is a medicine containing human Alpha₁-Proteinase Inhibitor (Alpha₁-PI) that is used to treat adults with lung disease (emphysema) because of severe Alpha₁-antitrypsin (Alpha₁) deficiency. GLASSIA is not meant to be used as a therapy for lung disease other than severe Alpha₁ deficiency. Effects of GLASSIA on worsening lung function and emphysema progression have not been proven in clinical trials. Long-term effects of Alpha₁ replacement and maintenance therapy have not been studied.

IMPORTANT SAFETY INFORMATION

What is the most important information I need to know about GLASSIA? • GLASSIA can cause severe allergic reactions including hives, swelling in the mouth or throat, itching, tightness in the chest, trouble breathing, wheezing, faintness or low blood pressure • If you will be taking GLASSIA outside a healthcare setting, ask your healthcare provider (HCP) about an epinephrine pen and/or other supportive care for certain severe allergic reactions.

Who should not use GLASSIA? Do not use GLASSIA if you: • Have immunoglobulin A (IgA) deficiency with antibodies to IgA • Have a severe allergic reaction to human Alpha₁-PI products.

IMPORTANT SAFETY INFORMATION, CONTINUED

What are the possible or reasonably likely side effects of GLASSIA?

If any of the following problems occur contact your healthcare provider (HCP) or call emergency services right away: • Worsening or flare-up of your chronic obstructive pulmonary disease (COPD) • Hives, swelling in the mouth or throat, itching, chest tightness, trouble breathing, wheezing, fainting or dizziness. These could be signs of a serious allergic reaction.

The most common side effects that may occur are headache and upper respiratory tract infections.

Other possible side effects of GLASSIA include: • Cough • Sinus infection • Chest discomfort • Dizziness

• Increased liver enzymes • Shortness of breath

• Nausea • Fatigue

These are not all the possible side effects. Tell your HCP about any side effect that bothers you or that does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please see the Important Facts About GLASSIA on the next page.

©2022 Takeda Pharmaceuticals U.S.A., Inc. 300 Shire Way, Lexington, MA 02421. 1-877-TAKEDA-7 (1-877-825-3327). All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. GLASSIA is a registered trademark of Kamada Ltd., and used under license. OnePath is a registered trademark of Shire Human Genetic Therapies, Inc. US-GLA-0337v1.0 02/22

IMPORTANT FACTS ABOUT GLASSIA (glasssee-ă) [Alpha1-Proteinase Inhibitor (Human)] Injection Solution – For Intravenous Administration What is GLASSIA? GLASSIA is a liquid medicine containing human Alpha1-Proteinase Inhibitor (Alpha1-PI) also known as alpha1-antitrypsin (AAT), which is purified from human blood. The main purpose of infusing GLASSIA is to increase the levels of the AAT protein in your blood and lungs. AAT protein protects the lung tissue by blocking certain enzyme-caused damage. Such damage can lead to severe lung disease, such as emphysema.

Limitations of Use: • The effects of increasing the AAT protein levels with GLASSIA or any other Alpha1-PI product on worsening pulmonary function and progression of emphysema have not been proven in clinical trials.

• The long-term effects of AAT replacement and maintenance therapy with GLASSIA have not been studied.

• GLASSIA is not intended as a therapy in individuals with lung disease other than severe Alpha1-PI deficiency.

Who should not use GLASSIA? Do not use GLASSIA if you: • Have immunoglobulin A (IgA) deficiency with antibodies to IgA • Have had a severe allergic reaction to human Alpha1-PI products.

What is the most important information that I should know about GLASSIA? Severe allergic reactions can occur with GLASSIA. Your doctor will inform you about signs of allergic reactions which include hives, swelling in the mouth or throat, itching, tightness in the chest, trouble breathing, wheezing, faintness, low blood pressure, or serious allergic reaction. If you have any of these reactions, discontinue use of the product and contact your physician and/or seek immediate emergency care, depending on the severity of the reaction.

If you or your caregiver will be administering GLASSIA outside a healthcare setting, ask your doctor about an epinephrine pen and/or other supportive care for certain severe allergic reactions.

Ask your doctor to make sure you receive training on how and when to use any prescribed supportive care medicine and keep it close at hand when administering GLASSIA. How should I take GLASSIA? • GLASSIA is given directly into the bloodstream.

• You can get GLASSIA at your healthcare professional’s office, clinic, hospital, or delivered directly to your home by a healthcare professional from a limited network of specialty pharmacy providers.

• Your healthcare professional will decide if self-infusion in your home is right for you. You should be trained on how to do infusions by your healthcare professional.

What should I tell my healthcare professional before I start using GLASSIA? Before starting GLASSIA, tell your healthcare professional if you: • Have IgA deficiency with antibodies to IgA. • Have a history of severe allergic reactions to Alpha1-PI products.

What are the possible or reasonably likely side effects of GLASSIA? • A possible side effect to GLASSIA is worsening or flare-up of your chronic obstructive pulmonary disease (COPD) in which your breathing gets worse than usual.

• Call your healthcare professional or go to your emergency department right away if you get: Hives, swelling in the mouth or throat, itching, chest tightness, trouble breathing, wheezing, fainting or dizziness. These could be signs of a serious allergic reaction.

• The most common side effects are headache and upper respiratory tract infections. Other possible side effects of GLASSIA include: cough, sinus infection, chest discomfort, dizziness, increased liver enzymes, shortness of breath, nausea, and fatigue.

These are not all of the possible side effects for GLASSIA. You can ask your healthcare professional for information that is provided to healthcare professionals. Talk to your healthcare professional about any side effects that bother you or that don’t go away.

How do I store GLASSIA? Store GLASSIA refrigerated or at room temperature.

• You can store GLASSIA in the refrigerator (36°F to 46°F [2°C to 8°C]). Do not freeze.

• You can store GLASSIA at room temperature (up to 77°F [25°C]) for up to one month. You must use GLASSIA within one month once you remove it from the refrigerator. Do not re-refrigerate GLASSIA once the product has been stored at room temperature.

• Keep the GLASSIA vial in the box until you are ready to administer the product.

Check the expiration date on the carton and vial label. Do not use GLASSIA after the expiration date.

How do I get more information about GLASSIA? The risk information provided here is not comprehensive. To learn more, talk about GLASSIA with your healthcare provider.

The FDA-approved Full Prescribing Information including Information for Patients and Instructions for Use can be found at www.glassia.com or call 1-877-TAKEDA-7 (1-877-825-3327).

Manufactured by: Kamada Ltd. Beit Kama MP Negev 8532500 Israel

Distributed by: Baxalta US Inc. Lexington, MA 02421 USA

U.S. License No. 1826 US-GLA-0282v1.0

Rev 7/21

At the 2023 Alpha-1 Foundation National Conference, Dr. Robert Sandhaus presented on “General Patient Care & Treatment as an Alpha- Questions to Ask Your Doctor” during a breakout session. The full recording can be viewed on alpha1.org in the video library.

Q: What should I expect my Healthcare Provider (HCP) to know?

A: They should have a basic understanding of Alpha-1 and a commitment to update their knowledge. They should be willing to accept education from you and any literature that you would supply. They should expect that you will schedule and attend regular office visits.

Q: What do you ask your HCP once you are diagnosed with Alpha-1 Antitrypsin Deficiency?

1. Do you know about Alpha-1 Antitrypsin Deficiency and its treatment?

2. How many Alpha-1 patients have you treated and how many do you currently treat?

3. Do you know about the various diseases associated with Alpha-1 including emphysema, bronchiectasis, liver fibrosis, liver cirrhosis, liver cancer, etc.?

4. How familiar are you with the therapies available to treat Alpha-1 lung disease?

5. Do you know pulmonary and liver specialists that you can turn to for advice and referral?

6. What can I do to keep myself as healthy as possible?

www.alpha1.org

Q: What List of Questions should I ask my HCP on follow-up visits: 1.

2.

3.

4.

5.

Have you/will you check my lung function (PFT)?

Have you/will you check my liver function?

Have you/will you check my oxygen levels?

Have you/will you check my exercise capacity?

Have you/will you check my COPD Assessment Test (CAT)?

6. Is it time for me to have a liver ultrasound or a Fibroscan?

Q: Where can I find an Alpha-1 Specialist?

A: Visit the Clinical Resource Centers (CRC) on alpha1. org to find an Alpha-1 Specialist in your area. There are more than 80 CRCs around the United States focused on Adult Lung disease, Adult liver disease and Pediatric Liver Disease.

ASK THE ALPHA DOC

What to Ask Your Healthcare Provider

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A

lphas, friends, and family came together on August 6, 2023, for the Step Forward for Alpha-1 Denver Walk and Picnic.

The annual tradition resumed this summer, after a hiatus due to the pandemic. The Alpha-1 Foundation hosted an Alpha-1 Education Day the day before, August 5th, with local Alpha-1 experts, patients, family members and industry partners.

The annual picnic, hosted by Dr. Robert “Sandy” Sandhaus and his wife Dot, joined together the Denver Alpha-1 community for an afternoon of Alpha-1 awareness, support, and camaraderie.

Attendees heard from Jon Hagstrom, Scott Santarella, Dr. Robert Sandhaus, Dr. Jeanine D’Armiento, Dr. Karina Serban, and Dr. Patrick Hume, the newest Alpha-1 Clinical Resource Center doctor at National Jewish Health in the Division of Pulmonary, Critical Care and Sleep Medicine.

For 30 years, the Sandhaus’ have opened their home to the Denver Alpha-1 Support Group and local Alphas for a beautiful lunch and waterfront activities.

The annual picnic tradition started as an annual get together of the local support group and after about five years it became larger with the help of the organization. We are grateful for their generosity and hospitality year after year. It is truly an event that everyone has looked forward to each year.

“The Alpha-1 picnic that Dot and I have hosted consecutively every year for 29 years, until COVID, had been a tradition that we, as well as the Alpha-1 community looked forward to and enjoyed immensely. To be able to add the 30th, and likely our final picnic this summer, allowed us to enjoy one last bash together before we let others pick up the torch to unite the Alpha-1 family in celebration,” said Dr. Robert "Sandy" Sandhaus

ALPHA-1 COMMUNITY

Step Forward for Alpha-1 Denver Walk & Picnic

It would not be a complete picnic in Denver without the delicious Bonnie Brae Ice Cream generously donated by Judy and Ken Simon. A “Denver Tradition”, the family-owned local ice cream shop serves the best quality ice cream and has provided a friendly gathering for its neighbors since 1986.

This year, picnic attendees got to taste two of their original signature flavors - peaches and cream and chocolate and cappuccino. Over the years Bonnie Brae Ice Cream has developed over 120 different flavors of ice cream in addition to 36 different sherbet and sorbets and 12 Vegan flavors.

www.alpha1.org

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ALPHA-1 COMMUNITY 18

Step Forward for Alpha-1 Denver Walk & Picnic Before the picnic, Alpha-1 Foundation leadership including Jon Hagstrom, Chair of Board of Directors, Scott Santarella, President and CEO, and Dr. Sandhaus, Clinical Director, and several Alpha-1 staff joined the teams for a walk around Stern Park in Littleton, Colorado. Top fundraising teams for this Building Friends for a Cure (BFC) event included Team Tom Roxanne Dye ( in memory of her brother Tom), Team Whittakers (Team Captain Michelle Mayo) and Team DeVires (Team Captain Jane DeVires) in honor of their son Brad, a transplant recipient.

Thank you to our Building Friends for a Cure sponsors AlphaNet, CSL Behring, Grifols and FOUNDATION Takeda. 1 ALPHA-1

1-877-2-CURE-A1 (228-7321)

NOW AVAILABLE 1-, 4-, and 5-gram vials

Discover the ZEMAIRA difference...

CONVENIENCE of low-volume infusion in as little as 15 minutes*

PURITY achieved through rigorous and exacting manufacturing procedures†

EFFICACY proven in clinical trials to raise and maintain levels of the Alpha-1 protein

*Average infusion time is based on an infusion rate of 0.08 mL/kg/min for a 165lb patient. Individual experiences may vary. †

While all efforts are made to prevent transmission of infectious agents and viruses, the risk of transmission cannot be completely eliminated.

...and our commitment to Alphas.

ZEMAIRA will be the only Alpha-1 therapy to offer 1-, 4-, and 5-gram vials to help streamline preparation and offer greater simplicity for people with Alpha-1.

Talk to your doctor about ZEMAIRA, and learn more at ZEMAIRA.com.

IMPORTANT SAFETY INFORMATION ZEMAIRA®, Alpha1-Proteinase Inhibitor (Human), is indicated to raise the plasma level of alpha1-proteinase inhibitor (A1-PI) in patients with A1-PI deficiency and related emphysema. The effect of this raised level on the frequency of pulmonary exacerbations and the progression of emphysema have not been established in clinical trials.

Please see additional Important Safety Information and brief summary of prescribing information for ZEMAIRA on the following page.

ZEMAIRA is manufactured and distributed by CSL Behring LLC. ZEMAIRA® is a registered trademark of CSL Behring LLC. © 2023 CSL Behring LLC. 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring.com www.ZEMAIRA.com USA-ZMR-0143-AUG23

IMPORTANT SAFETY INFORMATION (CONTINUED) ZEMAIRA may not be suitable for everyone; for example, people with known hypersensitivity to components used to make ZEMAIRA, those with a history of anaphylaxis or severe systemic response to A1-PI products, and those with certain IgA deficiencies. If you think any of these may apply to you, ask your doctor.

Early signs of hypersensitivity reactions to ZEMAIRA include hives, rash, tightness of the chest, unusual breathing difficulty, wheezing, and feeling faint. Immediately discontinue use and consult with physician if such symptoms occur.

In clinical studies, the following adverse reactions were reported in at least 5% of subjects receiving ZEMAIRA: headache, sinusitis, upper respiratory infection, bronchitis, fatigue, increased cough, fever, injection-site bleeding, nasal symptoms, sore throat, and swelled blood vessels.

Because ZEMAIRA is made from human blood, the risk of transmitting infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent and its variant (vCJD), cannot be completely eliminated.

Please see full prescribing information for ZEMAIRA. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You can also report side effects to CSL Behring’s Pharmacovigilance Department at 1-866-915-6958.

ZEMAIRA®, Alpha1-Proteinase Inhibitor (Human) lyophilized powder for reconstitution for intravenous use Initial U.S. Approval: 2003 BRIEF SUMMARY OF PRESCRIBING INFORMATION These highlights do not include all the information needed to use ZEMAIRA safely and effectively. See full prescribing information for ZEMAIRA. -----------------------------------INDICATIONS AND USAGE---------------------------------• ZEMAIRA is an alpha1-proteinase inhibitor (A1-PI) indicated for chronic augmentation and maintenance therapy in adults with A1-PI deficiency and clinical evidence of emphysema (1).

• The effect of augmentation therapy with ZEMAIRA or any A1-PI product on pulmonary exacerbations and on the progression of emphysema in A1-PI deficiency has not been demonstrated in randomized, controlled clinical studies (1).

---------------------------------------CONTRAINDICATIONS ----------------------------------• History of anaphylaxis or severe systemic reactions to ZEMAIRA or A1-PI protein (4).

• Immunoglobulin A (IgA)-deficient patients with antibodies against IgA, due to the risk of severe hypersensitivity (4).

-------------------------------WARNINGS AND PRECAUTIONS------------------------------• Observe any signs of hypersensitivity such as tachycardia, hypotension, confusion, syncope, oxygen consumption decrease, and pharyngeal edema when administering ZEMAIRA to patients with known hypersensitivity to an A1-PI product (5.1).

• Patients with selective or severe IgA deficiency can develop antibodies to IgA and, therefore, have a greater risk of developing potentially severe hypersensitivity and anaphylactic reactions. If anaphylactic or severe anaphylactoid reactions occur, discontinue the infusion immediately (5.2).

• ZEMAIRA is not indicated as therapy for lung disease patients in whom severe A1-PI deficiency has not been established (1).

• Because ZEMAIRA is made from human blood, it may carry a risk of transmitting infectious agents, e.g., viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent (5.3).

-------------------------------DOSAGE AND ADMINISTRATION-----------------------------For intravenous use after reconstitution only (2).

-------------------------------------ADVERSE REACTIONS--------------------------------------

• The recommended weekly dose of ZEMAIRA is 60 mg/kg body weight. Dose ranging studies using efficacy endpoints have not been performed with ZEMAIRA or any A1-PI product (2).

• Administer through a suitable 5 micron infusion filter (not supplied) at room temperature within 3 hours after reconstitution (2.2).

• Do not mix with other medicinal products. Administer through a separate dedicated infusion line (2.2).

• Administer at a rate of approximately 0.08 mL/kg/min as determined by the response and comfort of the patient (2.2).

• Monitor closely the infusion rate and the patient’s clinical state, including vital signs, throughout the infusion. Slow or stop the infusion if adverse reactions occur.

If symptoms subside promptly, the infusion may be resumed at a lower rate that is comfortable for the patient (2.2).

• Serious adverse reactions reported following administration of ZEMAIRA in prelicensure clinical trials included one event each in separate subjects of bronchitis and dyspnea, and one event each in a single subject of chest pain, cerebral ischemia and convulsion.

• The most common adverse reactions occurring in at least 5% of subjects receiving ZEMAIRA in all pre-licensure clinical trials were headache, sinusitis, upper respiratory infection, bronchitis, asthenia, cough increased, fever, injection site hemorrhage, rhinitis, sore throat, and vasodilation (6).

To report SUSPECTED ADVERSE REACTIONS, contact CSL Behring Pharmacovigilance at 1-866-915-6958 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

--------------------------------DOSAGE FORMS AND STRENGTHS--------------------------ZEMAIRA is supplied in a single-dose vial containing approximately 1000 mg, 4000 mg, or 5000 mg of functionally active A1-PI as a white to off-white lyophilized powder for reconstitution with 20 mL, 76 mL, or 95 mL of Sterile Water for Injection, USP. The amount of functional A1-PI is printed on the vial label and carton (3).

Based on September 2022 revision

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You can also report side effects to CSL Behring’s Pharmacovigilance Department at 1-866-915-6958.

Research is so important; I believe gene therapies will have the most significant impact on an Alpha’s future.

We need these promising treatments to become widely available as soon as possible. Participation in the Alpha-1 Research Registry will help us get there quicker.

I wish for Will to know how much we love and support him. I hope he stays healthy, finds love, has children, and continues to enjoy his passions. Whether he gets cured or needs treatment, I wish for a positive FOUNDATION and joyful life. 1 ALPHA-1

ALPHA-1 KIDS

A Mother's Journey: Navigating Alpha-1 with Julie Spilker

M

y son, Will, was diagnosed in 2015 with Alpha-1 Antitrypsin Deficiency (Alpha-1) at the age of four. It was a challenging time with many doctor's visits before we got the genetic diagnosis. He started having strange symptoms when he began preschool, like swelling after getting sick. Initially, his doctors thought it was allergies, but tests didn't confirm that. Finally, a liver test led to a pediatric gastroenterologist discovering Alpha-1. We had no family history of Alpha-1, this was the first time that we had heard of it. Our families generally had good health, with only minor allergies and asthma.

We contacted the Alpha-1 Foundation soon after Will's diagnosis and were encouraged to join a support group and stay positive. The Alpha-1 Foundation has been our best resource. We follow their research updates and attend support group meetings regularly.

Connecting with other Alpha-1 kids parents has been reassuring and has helped us stay positive and proactive. The best advice I would give other parents is to find a good doctor, talk openly with your child about their Alpha-1 diagnosis, and promote a healthy lifestyle. Also, support from family and friends is crucial.

www.alpha1.org

Julie Spilker's journey as a mother of a child with Alpha-1 highlights the importance of early diagnosis, support from organizations like the Alpha-1 Foundation, and the love and resilience of families facing this condition.

21

ALPHA-1 COMMUNITY

From Diagnosis to Advocacy, How One Woman Found Strength in Connecting with Others

L

ife is a big puzzle, made up of many pieces that fit together. Each piece is an experience that teaches, connects, and changes us. LaToya “Toya” DeLeon's story is an example of how connecting those pieces can help us view the bigger picture more clearly.

Her story showcases the strength, community, and determined spirit of a woman making a difference.

In 2015, Toya found herself in the middle of a relentless battle against a severe case of pneumonia. Weeks turned into a month of struggling with the illness, and while her physical strength returned, persistent shortness of breath lingered. A diagnosis of pneumonia-induced asthma shed some light on her struggles, but it was only the beginning of the path that would lead to the discovery of her true health condition.

2016 marked a new chapter in Toya's health journey.

Kidney problems led to a CT scan that revealed pulmonary nodules and emphysema. What made this discovery more perplexing was that she was a non-smoker, making the diagnosis of emphysema difficult to comprehend. However, her doctor's focus shifted to the nodules, and she was referred to a pulmonologist. Toya's medical history was meticulously reviewed and her pulmonologist suggested a test for Alpha-1, an unlikely genetic condition, given her family history. The results revealed that she was a ZZ Alpha.

support for those affected by Alpha-1, became a beacon of hope. Toya began attending local support group meetings and participating in events like the annual Virtual Walk, where she found herself surrounded by a community that understood her struggles.

Later that year, inspired by her AlphaNet Coordinator’s consistent presence in her life, Toya became an AlphaNet Coordinator herself. Drawing from her personal experience, she felt a deep calling to support others facing the challenges of Alpha-1.

Toya's goal was simple but powerful—to spread awareness, offer support, and be a listening ear for those navigating the unfamiliar territory of an Alpha-1 diagnosis. For Toya, one of the most rewarding aspects of being a Coordinator is the opportunity to connect with others. Their shared experiences have formed bonds that transcend medical diagnoses, transforming strangers into an extended family of understanding and support.

Outside of her Alpha-1 advocacy, Toya cherishes her role as a grandmother to five adored grandchildren.

Her love for her family, passion for travel, and creative pursuits in crocheting have added joy and purpose to her life.

Toya's story is a testament to the power of community, compassion, and resilience that resides within everyone. Her journey from diagnosis to advocacy and support serves as a glimmer of light, illuminating the path for others to find strength in unity and purpose in making a difference. As Toya continues to piece together her story, her impact resonates far beyond her own life, leaving a legacy of empowerment and connection for generations to FOUNDATION come. 1 ALPHA-1

Eager to learn more about her diagnosis, Toya immediately went to the internet and found the Alpha-1 Foundation. The Foundation, dedicated to, finding a cure, raising awareness, and providing

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1-877-2-CURE-A1 (228-7321)

READY-TO-INFUSE

PROLASTIN C LIQUID

PROLASTIN®-C LIQUID

---------------DOSAGE FORMS AND STRENGTHS-------------For injection: approximately 500 mg (10 mL), 1,000 mg (20 mL) and 4,000 mg (80 mL) of a solution for injection in single-dose vials.

HIGHLIGHTS OF PRESCRIBING INFORMATION

------------------------CONTRAINDICATIONS ----------------------• Immunoglobulin A (IgA) deficient patients with antibodies against IgA. • History of anaphylaxis or other severe systemic reaction to Alpha1-PI.

Alpha1-Proteinase Inhibitor (Human)

These highlights do not include all the information needed to use PROLASTIN-C LIQUID safely and effectively. See full prescribing information for PROLASTIN-C LIQUID. PROLASTIN-C LIQUID (Alpha1-Proteinase Inhibitor [Human]) Solution for Intravenous Injection Initial U.S. Approval: 1987 ---------------------INDICATIONS AND USAGE -------------------PROLASTIN®-C LIQUID is an Alpha1-Proteinase Inhibitor (Human) (Alpha1-PI) indicated for chronic augmentation and maintenance therapy in adults with clinical evidence of emphysema due to severe hereditary deficiency of Alpha1-PI (alpha1-antitrypsin deficiency).

Limitations of Use: • The effect of augmentation therapy with any Alpha1-PI, including PROLASTIN-C LIQUID, on pulmonary exacerbations and on the progression of emphysema in Alpha1-PI deficiency has not been conclusively demonstrated in randomized, controlled clinical trials.

• Clinical data demonstrating the long-term effects of chronic augmentation or maintenance therapy with PROLASTIN-C LIQUID are not available.

• PROLASTIN-C LIQUID is not indicated as therapy for lung disease in patients in whom severe Alpha1-PI deficiency has not been established.

-----------------DOSAGE AND ADMINISTRATION---------------For intravenous use only.

• Dose: 60 mg/kg body weight intravenously once per week.

• Dose ranging studies using efficacy endpoints have not been performed with any Alpha1-PI product, including PROLASTIN-C LIQUID. • Administration: 0.08 mL/kg/min as determined by patient response and comfort.

-----------------WARNINGS AND PRECAUTIONS---------------• Severe hypersensitivity and anaphylactic reactions may occur in IgA deficient patients with antibodies against IgA. Discontinue administration of the product and initiate appropriate emergency treatment if hypersensitivity reactions occur.

• Because PROLASTIN-C LIQUID is made from human plasma, it may carry a risk of transmitting infectious agents, e.g., viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

------------------------ADVERSE REACTIONS----------------------The most common adverse reactions during PROLASTIN-C LIQUID clinical trials in > 5% of subjects were diarrhea and fatigue, each of which occurred in 2 subjects (6%).

To report SUSPECTED ADVERSE REACTIONS, contact Grifols Therapeutics LLC at 1-800-520-2807 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Grifols Therapeutics LLC Research Triangle Park, NC 27709 USA Revised: 5/2020 U.S. License No. 1871 3062338/3062339

1 ALPHA-1 FOUNDATION The Alpha-1 Legacy Society

Leave a Legacy Giving Back with a Bequest

How can I Leave a Legacy?

Are there any other member benefits?

A planned gift can benefit you, your loved ones and the fight for a cure for Alpha-1 Antitrypsin Deficiency . Wills and bequests are two important parts of any legacy plan. They help make sure your assets are distributed in a way that best aligns with your values. Aside from giving you peace of mind, your will and other estate planning documents provide an ideal opportunity to tell future generations how much you care about their future.

Yes! Members of the Alpha-1 Legacy Society are entitled to the following benefits: - Special member reception at annual National Conference - Annual meeting with Alpha-1 Foundation leadership - Invitations to attend research update meetings - Society lapel pin to wear to events - Alpha-1 Legacy Society newsletter - Recognition in the Alpha-1-To-One magazine - Special recognition at meetings and conferences

Who Can Join?

The John W. Walsh Founders Circle

Anyone, regardless of age or income, can gain from financial and estate planning. Planned giving can enable charitable donations at a level that you might not have thought possible, while maximizing the tax benefits for you and your family. The Alpha-1 Legacy Society is open to all those that leave the Alpha-1 Foundation a planned gift, no matter the amount.

Wh et h er yo u’ve al re ady d eci d ed to m ake a le gac y gi f t o r are exp lo r i ng your o p t i o n s, o u r team i s h ap py to h elp ! Pleas e co ntac t us w i t h any q u es t i on s.

This circle is named after John W. Walsh, Co-founder of the Alpha-1 Foundation, who dedicated his life’s work to finding a cure for Alpha-1 and is intended to pay tribute to his legacy.

Members of this circle would have notified the Foundation of their plans of having the Alpha-1 Foundation as a primary beneficiary of $50,000 or more of a planned gift. Additional benefits include recognition on a plaque at the Foundation offices and a reception at the Foundation’s biennial Investigators meeting to hear researchers report on their studies.

(8 7 7 ) 2 - C UR E-A1 o r (8 7 7 ) 2 2 8 - 7 3 2 1 ex t. 2 3 3 a m c b r id e @ a l p h a 1 . o rg W W W. AL P H A1 . O R G ve r si o n 1. 1 - 2-17-2022

www.alpha1.org

Alpha-1 Foundation

@alpha1foundation

@alphafriend in Alpha-1 Foundation

Are you receiving our emails?

Do you receive the monthly e-newsletter “Community Currents”? This is a good time to check to make sure that you are on our e-mail list. Update your contact information by visiting our new website www.alpha1.org SUPPORT GROUP MEETINGS Support groups are meeting both in-person and virtually on Zoom to provide everyone the support and education they need. To find your local Support Group and view the complete list of upcoming meetings, visit www.alpha1.org and the Events Calendar online.

To find your local Alpha-1 Support Group and view the complete list of upcoming meetings, visit the Events Calendar at www.alpha1.org

UPCOMING EDUCATION EVENTS October 4, 2023

2024 Open Enrollment Webinar

Online

November 11, 2023

Alpha-1 Education Day

Boston, MA

December 2, 2023

Alpha-1 Education Day

Raleigh, NC

2023 CALENDAR

Calendar of Events

For more information about the Alpha-1 Education Day, please visit www.alpha1.org

UPCOMING EVENTS September 2023

Riding for Reason

Nationwide

November

Alpha-1 Awareness Month Virtual Walks

Nationwide

For more information about Building Friends for a Cure, please contact: Angela McBride (877) 228-7321 ext. 233 or amcbride@alpha1.org

www.alpha1.org

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1 ALPHA-1 FOUNDATION 3300 Ponce de Leon Blvd. • Coral Gables, FL 33134

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