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Annual National Education Conference

Alpha-1 Conference

The 27th Annual Alpha-1 National Education Conference will be held June 29 – July 1, 2018 in San Francisco, CA.

The National Conference is the largest annual gathering of Alphas, their families, leading healthcare professionals and industry in the world. It is a three day event with educational programs given by national experts and leaders in the Alpha-1 field. The conference provides attendees and exhibitors the opportunity to network and increase their understanding of Alpha-1 and COPD.

The National Conference provides a unique opportunity to meet patients diagnosed with Alpha-1, their families, industry, and healthcare professionals such as respiratory therapists, nurse practitioners, physicians and nurses.

View the National Conference Flyer.

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Conference Location and Hotel Reservationsplus

Conference Venue

Hyatt Regency San Francisco Airport
1333 Bayshore Highway
Burlingame, CA 94010
(650) 347-1234

Hotel Reservations

Overflow Block:

The room block at the Hyatt Regency is currently sold out. The Alpha-1 Foundation is in the process of organizing an overflow block at a property near the conference venue. It will be at the same conference rate of $149 and will also have a complimentary hotel shuttle.

Please be on the lookout for that announcement next week when the contract is finalized. We will email those who have inquired directly about the overflow block and will also send a general statement to the community. If you have not yet been able to book your stay, please be sure to do so quickly when you receive the information as it will be first come first serve.

If you would like to be added to the list to be notified about the overflow, please email mrequejado@alpha1.org.

Airport, Shuttle and Parking Informationplus

Airport Information

San Francisco Airport (SFO)

Shuttle Information

Complimentary Hotel Shuttle: The hotel’s complimentary shuttle runs every 10-15 minutes. From SFO, take your luggage to the Departures Level center island and look for the area marked “Hotel Shuttle.” The shuttle bus is marked “Hyatt Regency and Marriott.” For arrivals and departures between 12:00 a.m. and 4:46 a.m., free shuttles pick up guests every 30 minutes.

Parking Information

Self-parking at the hotel will be available for a discounted rate of $12.50 per day.

Patient, Family and Caregiver Registrationplus

Registration Deadline: May 15th

To register online for the 2018 National Conference, fill out the online form below. To register by mail or fax, fill out the registration form and follow the instructions on the back to send it in.

Registration fees include admittance to all on-site programs, events and the exhibit hall, meeting materials (to be picked up at on-site registration) and meals on Friday, Saturday and Sunday morning. Registration does not include travel or hotel reservations.

If you have questions about the registration process, please contact Kim Caraballo at kcaraballo@alpha1.org or call 877-228-7321 ext 323.

Please note: All persons who are employed by an industry company must register to attend as an exhibitor even if they will not be participating in the exhibit booth, including MSLs and healthcare providers. To register as an exhibitor, please contact Alexis Artiles, Director of Marketing and Events, at aartiles@alpha1.org.

 

Exhibitor and Industry Registrationplus

To learn about exhibit opportunities at the National Conference, please contact Alexis Artiles, Director of Marketing and Events, at aartiles@alpha1.org.

To register as an exhibitor or if you are a member of industry, please contact Alexis Artiles, Director of Marketing and Events, at aartiles@alpha1.org.

Please note: All persons who are employed by an industry company must register to attend as an exhibitor even if they will not be participating in the exhibit booth, including MSLs and healthcare providers.

Pre-Conference Eventsplus

Thursday, June 28th

CSL Behring's 11th Annual Walk for Breath Celebration

Walk for Breath Agenda:

  • 2:00pm - 3:00 pm: Registration Onsite at Hyatt Regency San Francisco Airport Hotel
  • 2:45pm - 3:15pm: Buses will depart from the Hyatt Regency San Francisco Airport Hotel
  • 4:30pm - 5:45pm: Walk at Disney Family Museum
  • 6:00pm - 8:00pm: Educational Dinner at Fort Mason Center

Registration Process:

  • There is open registration onsite at the Hyatt Regency from 2:00-3:00pm on Thursday, June 28.
  • The Walk for Breath is open to all patients and caregivers attending the National Conference. However, this year CSL Behring will have a cap on the number of attendees at the Walk for Breath Celebration. We encourage everyone to come to open registration early to secure their spot at the Walk for Breath Celebration.
  • Due to state and federal laws, we are unable to permit healthcare professionals to attend this event. 

Friday, June 29th

Breakfast sponsored by Shire

Luncheon sponsored by Grifols

Conference Agendaplus

Don't miss the exciting general sessions and afternoon breakout sessions (also called "tracks")! All speakers have the ability to motivate, teach and inspire you to lead a healthy life. The sessions offer a large range of topics including Alpha-1 lung and liver, a research update, pulmonary rehab, advocacy and many more.

Thursday, June 28th

1:00 – 4:00 pm Early Conference Registration Hours
3:00 – 8:00 pm CSL Behring’s 11th Annual Walk for Breath Celebration

 

Friday, June 29th

8:30 – 10 am Breakfast sponsored by Shire
12 – 1:30 pm Luncheon sponsored by Grifols
9:00 – 5:00 pm Registration Hours
1:30 – 6:00 pm Exhibit Hall Hours
1:30 – 2:00 pm Conference Orientation for First Time Attendees
Cathey Horsak, Director of Community Programs, Alpha-1 Foundation
2:00 – 5:30 pm Meet the Experts
Registration available for questions with Clinical Resource Center doctors.
2:00 – 3:30 pm Community Engagement Forum – Ice Cream Social

 

Friday Afternoon Tracks

  Track 1 Track 2
3:45 – 4:30 pm Driving New Therapies and Tools in Alpha-1 – Presentation & Panel Discussion Part 1
Moderator: Jean Marc Quach, President & CEO, The Alpha-1 Project (TAP)
Alpha-1 Antitrypsin Deficiency 101 Lung
Jeanine D’Armiento, MD, PhD
4:35 – 5:20 pm Driving New Therapies and Tools in Alpha-1 – Presentation & Panel Discussion Part 2
Moderator: Jean Marc Quach
Alpha-1 Antitrypsin Deficiency 101 Liver
Jeffrey H. Teckman, MD

 

Friday Evening

6:00 – 8:00 pm Hospitality Receptions
CSL Behring, Grifols, Shire
8:00 – 9:30 pm Dessert Hour and Awards

 

Saturday, June 30th

7:30 – 8:15 am Breakfast
7:30 – 5:00 pm Exhibit Hall Hours
8:30 – 8:45 am Welcome and Opening Remarks
Gordon E. Cadwgan, PhD, Chair of the Board, Alpha-1 Foundation
8:45 – 9:15 am Alpha-1 Foundation Address
Henry R. Moehring, President and CEO, Alpha-1 Foundation
9:15 – 10 am

KEYNOTE - Patients as Partners: Having A Seat at the Table
Margaret Anderson, Managing Director, Deloitte Consulting LLP
(Previously Executive Director of FasterCures)

10:15 – 11:15 am Research Panel
Moderated by: Robert A. Sandhaus, MD, PhD, FCCP
Mark L. Brantly, MD
Jeanine D’Armiento, MD, PhD
Charlie Strange, MD, FCCP
Jeffrey H. Teckman, MD
Martin R. Zamora, MD
11:15 – 12 pm Platinum Sponsor Presentations:
CSL Behring, Grifols, Shire
12:00 – 1 pm Meet the Speakers
1:00 – 2:00 pm Lunch & Exhibits
2:00 – 4:00 pm Educational Program for Nurses:
Alpha-1 Antitrypsin Deficiency and Augmentation Therapy
AlphaNet is pleased to offer a free educational program for nurses, presented by Teresa Kitchen, RN, BSN, Clinical Nurse Manager. Three (3) CEU credits will be offered for nurses participating in this program.

 

Saturday Afternoon Breakout Sessions

  Track 1 Track 2 Track 3 Track 4
2:00 – 2:30 pm Nutrition for Advanced Lung Disease
Peggy Dai, MPH, RDN, CNSC
Alpha-1 Liver Disease in Adults
Philip Rosenthal, MD
Public Policy Update
Johanna Gray
Understanding Your Genetic Testing
Kimberly Foil, CGC
2:35 – 3:05 pm Sex Spoken Here; Intimacy and the Patient with Chronic Illness
Deborah Fending, RN, BSN, AE-C
How to Treat Normal Respiratory Infections
Mark L. Brantly, MD
Access & Reimbursement Panel of Experts
Moderator: Johanna Gray
Barbee Bennington
Angela Merkens
Basics of Alpha-1 Liver Disease in Children
Philip Rosenthal, MD
3:25 – 3:55 pm Pulmonary Rehabilitation Update
Chris Garvey FNP, MSN, MPA, MAACVPR
Anxiety & Depression
Kristen Holm, PhD, MPH
Improving Access to Supplemental Oxygen
Susan Jacobs, RN, MS
Managing Alpha-1 Liver Disease in Children
Philip Rosenthal, MD
4:00 – 4:30 pm Update on Lung Transplantation for A1AT-d
Steve Hays, MD
Importance of Clinical Trials and Participation
Charlie Strange, MD, FCCP
Traveling with Alpha-1
Eben "Skip" Scribner
There Will Be Stress: Keeping a Lid on the Negative Impacts of Alpha-1 Caregiving & Getting
Bonnie Chakravorty, MSW, PhD
4:35 – 5:05 pm Replacement Therapy After Transplant
Martin R. Zamora, MD
Conditions Associated with Alpha-1
Robert A. Sandhaus, MD, PhD, FCCP
Social Media Do’s/Don’ts & Making Connections
Alexis E Artiles
Maria Virginia Deliz
Creating a Healthy Home While Living with COPD
Miguel Villarreal, BS, MLS/MT, LVN

 

Saturday Evening

7:00 – 9:30 pm Dinner & Awards

 

Sunday, July 1st

7:30 - 9:30 am Breakfast
8:30 – 9:30 am Memorial Service

 

Speakersplus

Margaret Anderson
Managing Director, Deloitte Consulting LLP
(Previously Executive Director of FasterCures)
Alexis E Artiles
Director of Marketing and Events, Alpha-1 Foundation
Barbee Bennington
Support Group and Program Coordinator, Alpha-1 Foundation
Mark L. Brantly, MD
Vice Chair of Research, Department of Medicine, Professor of Medicine, Molecular Genetics and Microbiology; Alpha-1 Foundation Research Professor, University of Florida College of Medicine
Gordon E. Cadwgan, PhD
Chair of the Board of Directors, Alpha-1 Foundation
Bonnie Chakravorty, MSW, PhD
Retired Professor, Tennessee State University; Board Member, AlphaNet
Jeanine D’Armiento, MD, PhD
Associate Professor of Medicine in Anesthesiology; Director, Center for Molecular Pulmonary Disease in Anesthesiology and Physiology and Cellular Biophysics; Director, Center for LAM and Rare Lung Disease
Peggy Dai, MPH, RDN, CNSC
Senior Clinician Dietitian, UCLA Ronald Reagan Medical Center
Maria Virginia Deliz
Digital Media Manager, Alpha-1 Foundation
Deborah Fending, RN, BSN, AE-C
Staff Development Nurse, National Jewish Health
Kimberly Foil, CGC
Certified Genetic Counselor, Alpha-1 Foundation Genetic Counseling Program
Chris Garvey FNP, MSN, MPA, MAACVPR
UCSF Sleep Disorders and Pulmonary Rehabilitation
Johanna Gray
Senior Vice President, CRD Associates
Steve Hays, MD
Professor of Medicine, Medical Director of Advanced Lung Disease & Lung Transplant Program, University of California, San Francisco
Kristen Holm, PhD, MPH
Assistant Professor, National Jewish Health
Photo coming soon Cathey Horsak
Director of Community Programs, Alpha-1 Foundation
Susan Jacobs, RN, MS
Clinical Research Nurse Manager, Pulmonary and Critical Care Medicine; Nurse Coordinator, Center for Advanced Lung Disease, Stanford University Medical Center
Photo coming soon Angela Merkens
Volunteer Support Group Leader, Alpha-1 Foundation
Henry R. Moehring
President and CEO, Alpha-1 Foundation
Jean Marc Quach
President and CEO, The Alpha-1 Project (TAP)
Philip Rosenthal, MD
Professor of Pediatrics & Surgery, University of California, San Francisco
Robert A. Sandhaus, MD, PhD, FCCP
Clinical Director, Alpha- 1 Foundation; Executive Vice President and Medical Director, AlphaNet; Professor of Medicine, National Jewish Health
Eben "Skip" Scribner
President, Advanced Aeromedical
Charlie Strange, MD, FCCP
Professor of Pulmonary Medicine, Medical University of South Carolina (MUSC)
Jeffrey H. Teckman, MD
Professor of Pediatrics and Biochemistry Molecular Biology; Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine; Cardinal Glennon Children’s Medical Center
Miguel Villarreal, BS, MLS/MT, LVN
Clinical Research Coordinator II, UCLA David Geffen School of Medicine
Martin R. Zamora, MD
Professor of Medicine, Division of Pulmonary Sciences and Critical Care Medicine; Medical Director of Lung Transplantation, University of Colorado

 

Session Descriptionsplus

Coming soon.

Sponsors and Exhibitorsplus

Thank you to our 2018 Platinum Sponsors:

  • AlphaNet
  • CSL Behring
  • Grifols
  • Shire

Thank you to our 2018 Gold Sponsor:

  • Dohmen Life Science Services

Thank you to our 2018 Silver Sponsors:

  • Accredo
  • Coram
  • Diplomat

Thank you to our 2018 Bronze Sponsors:

  • Advanced Aeromedical
  • Arrowhead Pharmaceuticals

Thank you to our 2018 Non-profit Sponsors:

  • COPD Foundation
  • National Organization for Rare Disorders (NORD)
  • Patient Services, Inc
  • Plasma Protein Therapeutics Association (PPTA)

 

Things You Need to Know and FAQsplus

Free Educational Program for Nurses - Nursing CEUs 
AlphaNet is pleased to offer a free educational program for nurses. Three (3) CEU credits will be offered for nurses participating in this program. For more information about this program and to register, contact Teresa A. Kitchen, BSN, RN, Clinical Nurse Manager at (888) 553-0093.

Kids & Teenagers 
The Alpha-1 Kids program will sponsor activities for children and teens on Saturday. More information to come!

Oxygen Travel Fund 
The Oxygen Travel Fund provides oxygen and equipment for Alphas in financial need to travel to Alpha-1 educational events. To apply, please call (877) 228-7321 ext 251 with at least 30 days notice.

Participate in Research
Representatives of Alpha-1 research studies will be attending the conference and exhibiting to enroll those individuals interested in participating in Alpha-1 research.

Dress Code
Dress is casual for the meetings, sessions, and dinners. You may want to bring a sweater or light jacket, as the meeting rooms in the hotel can be cool.

Cell Phones and Electronic Devices
We ask that you please mute or turn off cell phones and other electronic communication devices during the general and breakout sessions.

Hotel Layout
COMING SOON

Remote Viewing
The conference sessions on Saturday will be available to view from any remote location on a laptop, cell phone, tablet or television as long as you have an internet connection. Links to these live videos will be distributed by email and facebook when the conference begins.

FAQs - Frequently Asked Questions 

COMING SOON

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Past National Conference Highlights

2017 National Education Conference Highlightsplus

The Alpha-1 Foundation’s Annual National Education Conference is a unique opportunity for many newly diagnosed Alphas and their families to receive answers to their questions and meet others like them. The 26th annual conference in Chicago, IL was no exception. After final review, 610 attendees from 45 states and 5 countries gathered on June 24 – 26 to speak to leading experts on Alpha-1, network with peers, and get involved in the Alpha-1 community through local support groups, research, awareness activities and fundraising.

View the 2017 Conference Agenda as a PDF here.

All of the 2017 conference presentations are available to view online at your convenience.

Thank you to our 2017 Platinum Sponsors:
AlphaNet
CSL Behring
Grifols
Shire

Thank you to our 2017 Gold Sponsor:
Dohmen Life Science Services

Thank you to our 2017 Silver Sponsors:
Accredo
Coram
Diplomat

Thank you to our 2017 Bronze Sponsors:
Advanced Aeromedical
Arrowhead Pharmaceuticals

Thank you to our 2017 Non-profit Sponsors:
COPD Foundation
National Organization for Rare Disorders (NORD)
Patient Services, Inc
Plasma Protein Therapeutics Association (PPTA)

2016 National Education Conference Highlightsplus

The Alpha-1 Foundation’s Annual National Education Conference is a unique opportunity for many newly diagnosed Alphas and their families to receive answers to their questions and meet others like them. The 25th annual conference in Miami, FL was no exception. After final review, 610 attendees from 45 states and 5 countries gathered on June 24 – 26 to speak to leading experts on Alpha-1, network with peers, and get involved in the Alpha-1 community through local support groups, research, awareness activities and fundraising.

View the 2016 Conference Agenda as a PDF here.

All of the 2016 conference presentations are available to view online at your convenience.

One of the highlights Friday afternoon was the Community Forum, which offered attendees an opportunity to meet with community leaders and discuss ways they can participate in shaping the future of Alpha-1. This was especially fitting with this year’s theme “Without YOU There Is No Solution.” Further weaving the theme throughout the weekend was the Foundation’s exhibit booth, which featured a quiz entitled “What is Your Alpha-1 Personality?” Over 40 percent of attendees took the quiz and were given one of four results: advocacy, fundraising, research or support. Take the Alpha-1 quiz and share your results with the Foundation on social media!

Read more about “helping ordinary people do extraordinary things” and the rest of Friday’s conference program.

For the second year, the conference offered Meet the Experts, an opportunity for Alphas, their caregivers and families to have “15-minute conversations” with Alpha-1 Clinical Resource Center physicians and ask their questions face-to-face. Over 45 Alphas and their guests took advantage of this opportunity and met with six doctors and the Alpha-1 Genetic Counselor.

The Foundation took time over the weekend to honor the many contributions and achievements that members of the Alpha-1 community have made. Friday evening at the Building Friends for a Cure (BFC) awards, attendees heard the Starfish Story about helping to save one beach-stranded starfish at a time, to make the point that "regardless of how insignificant it may seem to the eyes of others, we can all make a difference.” Read about this year’s many creative and inspired fundraisers.

Presented jointly by the Foundation and AlphaNet, the Advancement of Research Award was given to Mark Brantly, MD on Saturday evening for his dedication and determination to finding a cure for Alpha-1. The Foundation presented six more honorees with awards including the Dennis Pollock Spirit of Advocacy Award and the Inspirational Award. Read more.

THANK YOU to our 2016 Presenting Sponsors:

  • AlphaNet
  • Baxalta
  • CSL Behring
  • Grifols

Thank you to our 2016 Lead Sponsor:

Dohmen Life Science Services

Thank you to our 2016 Exhibitors:

  • Accredo
  • BioRx
  • Coram

Thank you to our 2016 Partners, Exhibitors, Non-profit Partners, and Research Studies:

Adult Liver Study
Advanced Aeromedical
Arrowhead Pharmaceuticals, Inc.
COPD Foundation
Heritage Biologics
National Organization for Rare Disorders (NORD)
Patient Services, Inc.
Plasma Protein Therapeutics Association (PPTA)
REACH
State of Florida Detection Program
University of Florida

2015 National Education Conference Highlightsplus

View the full 2015 Conference Agenda here.

2015 Alpha-1 National Conference opens with inspirational Appalachian Trail story, meetings with experts and session on community engagement.

Building Friends for a Cure honors community fundraisers; BFC program has raised more than $5 million over 10 years.

Thank you to our 2015 Presenting Sponsors:

  • AlphaNet
  • Baxalta
  • CSL Behring
  • Grifols

Thank you to our 2015 Lead Sponsor:

Dohmen Life Science Services

Thank you to our 2015 Exhibitors:

  • Accredo
  • BioRx
  • Coram

Thank you to our 2015 Partners, Exhibitors, Non-profit Partners, and Research Studies:

Advanced Aeromedical
COPD Foundation
National Organization for Rare Disorders (NORD)
Patient Services, Inc.
Plasma Protein Therapeutics Association (PPTA)
REACH
University of Florida Clinical Trials
Alpha-1 Antitrypsin Deficiency Adult Clinical and Genetic Linkage Study
Arrowhead Research Corporation

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Platinum Sponsors

AlphaNet
CSL Behring
Grifols
Shire
 
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Gold Sponsor

 
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Silver Sponsors