The Alpha-1-To-One Audio Podcast shares captivating personal stories of Alphas, caregivers, healthcare providers, researchers and others who help make the Alpha-1 community great.
Each episode will include their story – how they became involved in the Alpha-1 community, and what motivates them to continue their work.
Moderator Richard Lovrich sat down with Scott Santarella, the recently appointed President & CEO of the Alpha-1 Foundation, to discuss his s his vision for the Foundation and working with the outstanding Alpha-1 Community.
- Ep. 4- 2020 Alpha-1 Educational Scholarship Recipients
- Ep. 3- Alpha-1-to-One Podcast Episode 3: Advocacy
- Ep. 2- 20 Tough Words with Robert A. Sandhaus, MD, PhD, Clinical Director of the Alpha-1 Foundation
- Ep. 1- 21st Gordon L. Snider Critical Issues Workshop Preview
Richard Lovrich leads the conversation about the 20 tough Alpha-1 words. Within the virtual world, Alphas are invited to join the scientific workshops that are hosted by the Alpha-1 Foundation and other organizations. These discussions often bring up many new words for the attendees. Join Dr. Sandy Sandhaus, the Clinical Director for the Alpha-1 Foundation, for this podcast as he explains these tough words. Everyone will learn something new from this episode! Thank you Mike Allen, Chelsea Boring, Bart Flook, Lisa Kosak, Jean McCathern and Fred Walsh!
2021 brings a new Alpha-1-to-One Podcast series to the Alpha-1 community. This first episode is entitled “21st Gordon L. Snider Critical Issues Workshop Preview” and welcomes back moderator and Alpha-1 orator Richard Lovrich. Lovrich is joined by guests to discuss the 21st Gordon L. Snider Workshop, Dr. Alan Barker, Professor of Medicine, Pulmonary and Critical Care at Oregon Health & Science University and Dr. James F. Donohue, Professor of Medicine, Division of Pulmonary Diseases and Critical Care Medicine from the University of North Carolina, Chapel Hill.
This episode serves as a great preview of the workshop for patients, which is titled “Exacerbations and Pulmonary Comorbidities” and offers insight into the topics that will be discussed over the two days. The workshop will take place on Friday, January 29, 2021 from 9:00 AM to 1:00 PM ET and Saturday, January 30, 2021 from 9:00 AM to 12:00 PM ET.
- Ep. 9- Global Alpha-1 Discussion
- Ep. 8- Participation in Clinical Trials
- Ep. 7- A Special Mother’s Day Tribute
- Ep. 6- Joe Reidy Shares His Alpha Stories Over the Decades
- Ep. 5 -Catching up with Alpha Mom, Chelsea Boring
- Ep. 4 - A Conversation with Jonathan Maidment
- Ep. 3 - Updated COVID-19 Guidance & Recommendations
- Ep. 2 - Video Tips for Alphas hosted by Richard Lovrich
- Ep. 1 - Launch of the new Alpha-1-to-One Podcast: A Foundation Conversation with Miriam O'Day hosted by Richard Lovrich
Alpha Jean McCathern tells her Alpha story and her participation in Clinical Trials over the decades
Sharing their Alpha stories: Jena Frye, Billy Irvine and Nicole Ward.
Joe Reidy is a long time volunteer of the Alpha-1 community, he has been involved with the Foundation since it’s inception 25 years ago. Joe became a support group leader in 1994 and has led the NY/NJ Alpha-1 Support Group ever since. His group serves Alphas in the New York metropolitan area, New Jersey and Connecticut. Diagnosed with Alpha-1 in 1991, Joe has been involved with the community for decades in many rewarding and impactful roles, including as an Alpha-1 Foundation Board Member and a member of the Foundation’s Medical and Scientific Advisory Committee (MASAC).
Chelsea Boring, a busy mom of three from Wahoo, Nebraska, shares her Alpha story. Chelsea and her husband Matt, who is on active military duty, enjoy doing what all young families love to do: be together in the outdoors at their home in the country. Their Alpha-1 story began in 2015 when they learned their son Owen was a ZZ liver affected Alpha. Chelsea and Matt were already parents to their year-and-a-half old Emry, when they found out they were expecting. Her complicated pregnancy with the twins required many visits and extensive testing. While pregnant, Chelsea learned that both her and Matt were carriers for Alpha-1 Antitrypsin Deficiency (Alpha-1). The genetic report they received said that Alpha-1 does not affect people until adulthood, and they thought no further about it.
Alpha-1-to-One Podcast Episode 4: Jonathan Maidment from Alpha-1 Foundation on Vimeo.
Jonathan Maidment, the 24-year-old from Connecticut, walked the entire 2,650 miles of the PCT in 2019 and the 2,184 miles of the AT in 2014, raising an incredible amount of awareness about Alpha-1 Antitrypsin Deficiency (Alpha-1) and funds for research and related programs at the Alpha-1 Foundation. Maidment himself is an Alpha. He was diagnosed at age 10. As Alpha-1 is a genetic condition, his father, Dave, is also an Alpha and his mother, Karen, is a carrier. Maidment will return to the trails again in 2020 to hike the Continental Divide Trail, which consists of 3,100 miles between Mexico and Canada through the United States, along the Rocky Mountains and crossing Montana, Idaho, Wyoming, Colorado, and New Mexico.
Robert A. Sandhaus, MD, PhD PhD, FCCP graduated from Haverford College in Pennsylvania with a degree in molecular biology. He received a PhD in cell biology and an MD from the State University of New York at Stony Brook. In 1981, he founded the Alpha-1 Antitrypsin Deficiency Program at National Jewish Medical and Research Center in Denver and remains its director. He has served on the boards of directors of the Alpha-1 Association, Alpha-1 Foundation, AlphaNet, and Osteogenesis Imperfecta Foundation. He is currently the executive vice president and medical director of AlphaNet and the clinical director of the Alpha-1 Foundation. He is board certified in internal medicine, pulmonary disease, and critical care medicine.
Richard Lovrich has compiled a “how to” on online video podcasts. As much of our business, family and social life are taking place online here are a few tips on how Alphas can look and sound best when on social platforms. Whether in a Zoom, Skype, Houseparty, WhatsApp or Facebook Live, we are all turning in video stars, but are we ready for prime time?
Ms. Miriam O’Day is the president and chief executive officer (CEO) of the Alpha-1 Foundation. Her experience with the Alpha-1 patient community, the research and medical community, and public policy at the federal level, extends over twenty years. Ms. O’Day has been involved in government relations and strategic planning representing many organizations including the Alpha-1 Foundation, the Immune Deficiency Foundation (IDF), the COPD Foundation, the U.S. COPD Coalition, NTM Info and Research, the American Association for Respiratory Care and the National Organization for Rare Disorders (NORD). Ms. O’Day served as the former Senior Director of Public Policy of the Alpha-1 Foundation for 14 years. Ms. O’Day managed Federal government affairs, including legislative and regulatory collaboration with the COPD Community. Ms. O’Day coordinated testimony and position statements with voluntary leadership. She has been responsible for Federal Legislative Affairs for the American Association of Respiratory Care (AARC). On behalf of the AARC, Ms. O’Day worked to pass legislation that improved patient access to respiratory therapists. She chaired the Policy Committee for the US COPD Coalition, working closely with the COPD Congressional Caucus. Ms. O’Day was responsible for building the liaison relationship with the Food and Drug Administration (FDA) and the National Heart, Lung, and Blood Institute (NHLBI). She worked closely on issues with the Centers for Medicare and Medicaid Services (CMS) including supplemental oxygen and access to pulmonary rehabilitation.
This episode’s host
Richard Lovrich began his career as a Photographer, designer and project manager, in New York City, working from his own studio. HIs clientele spanned corporations, banking, magazines, cosmetics, drugs and fashion and his subjects ranged from business executives, to politicians, to Andy Warhol. Moving to upstate New York, he began working at the Albany Times Union, progressin gto become the paper’s first Art Director, winning national awards in illustration, design and writing. He was most recently the Creative Director of PROCTORS COLLABORATIVE a group of theaters in New York’s Capital region, including Proctors in Schenectady, Capital Repertory Theatre in Albany and Universal Preservation Hall in Saratoga Springs. The pandemic has caused the shuttering of all New York theatres and Richard finds himself furloughed, unemployed for the first time in his life. He advocates for local creatives and serves on boards supporting regional filmmaking initiatives. As an artist, Richard is actively photographing, with a concentration in portraiture of local creatives. He is also a writer and performer of very short stories and a playwright. Richard had suffered a lifetime of severe breathing difficulties and was diagnosed with Alpha-1 at 54 years of age. As a ZZ Alpha with advanced lung deterioration, he wanted to do what he could to make certain that others would not have to wait so long for their own diagnosis. He started upstate New York’s only Alpha 1 support group and continues to expand his contribution to the Alpha 1 community. He is a passionate advocate for early diagnosis, fitness, quality of life, quality of environment, affordable care and Alpha-1 dignity, driven by this mission.
- Ep. 4 – Alpha-1 Research – the making of a lifelong mission – Irina Petrache, MD
- Ep. 3 - How not to get diagnosed with Alpha-1 - Karen Erickson
- Ep. 2 - Hiking for a Cure - Jonathan Maidment
- Ep. 1 - A Caregiver's Story
Alpha-1 researcher and clinician Irina Petrache, MD of National Jewish Health in Denver, CO, talks with Alpha-1 Foundation Editorial Manager Alejandro Hernandez Padilla about the people and things that motivate her and those in her lab to keep pressing towards a cure and better treatments for people affected by Alpha-1.
This episode’s hosts
This episode is co-hosted by Martin Zamora, MD, scientific advisor for the Alpha-1 Foundation Board of Directors. Dr. Zamora is Professor of Medicine, Division of Pulmonary Sciences and Critical Care Medicine, at the University of Colorado at Denver School of Medicine, Aurora, Colorado. He was also the Medical Director of Lung Transplantation at the University of Colorado at Denver Health Sciences Center. He received his medical degree from the University of Colorado School of Medicine, and did his internship and residency in Internal Medicine and Pulmonary and Critical Care Fellowship at the University of Colorado Health Sciences Center, Denver. Dr. Zamora has been a member of the American Society of Transplantation Thoracic Committee, a member of the United Network for Organ Sharing Board of Directors, the UNOS Thoracic Committee and Chaired the Lung Allocation Subcommittee and was involved in the development and implementation of the Lung Allocation System. He also served as the Chair of the Foundation’s Transplant Issues Working Group and has been involved for many years with the Foundation’s Education Days, both locally and nationally. He has been an NIH funded researcher, has been the principal investigator of multiple industry sponsored studies, and has been awarded many honors, including most recently the America’s Top Doctors Award in 2017 and the Best Doctors in America Award for 2017.
In this episode of the Alpha-1-To-One Podcast, Karen Erickson shares the unlikely, but all too common story of how she was finally diagnosed with Alpha-1 Antitrypsin Deficiency. She also shares how connecting with people in the community and getting involved in fundraising were gamechangers throughout her journey to transplant and beyond.
Robert Sandhaus, MD, PhD returns to our Ask the Alpha Doc segment to answer a question about augmentation therapy. Submit your question to firstname.lastname@example.org.
This episode’s hosts
Our co-host is Alexis Artiles, director of marketing and events at the A1F. She can be reached at 877-228-7321, ext. 331 or email@example.com.
We sat down with Jonathan Maidment, a 23-year old Alpha, who raised more than $56,000 for the Alpha-1 Foundation’s research programs hiking the Appalachian Trail in 2014.
Now for 2018 the challenge has become bigger, as he is getting ready to hike the entire Pacific Crest Trail (PCT), also as a fundraiser for the A1F. The PCT is a long-distance hiking trail aligned with the highest portion of the Sierra Nevada and Cascade mountain ranges.
To follow and share Jonathan’s hike along the PCT, please visit facebook.com/hiking4acure
Proceeds from the fundraising activities relating to Jonathan will be dedicated to research and programs of the Alpha–1 Foundation to find a cure for the rare genetic condition Alpha-1 Antitrypsin Deficiency.
To contribute, visit alpha1.org/maidment
New Segment: Ask the Alpha Doc
This episode, we’re also introducing a new segment – Ask the Alpha Doc, where various Alpha-1 specialists will answer your questions about Alpha-1 lung and liver disease. This episode, our guest doctor is Robert A. Sandhaus, MD, PhD, FCCP, from National Jewish Health in Denver, CO.
Submit your question to firstname.lastname@example.org.
This episode’s hosts
Our co-host is Angela McBride, director of corporate relations and community engagement at the A1F. She can be reached at 877-228-7321, ext. 233 or email@example.com.
Learn more about the Building Friends for a Cure program.
On the inaugural episode of the Alpha-1-To-One Podcast, host, Maria Virginia Deliz, sits down with caregiver and Alpha-1 Foundation Director of Community Programs, Cathey Henderson.
Horsak shares the story of how she became involved with the Alpha-1 community after her husband’s death due to liver disease caused by Alpha-1 Antitrypsin Deficiency. She also shares why caregivers to play a major role in helping Alphas.
Cathey Henderson: 800-245-6809 or firstname.lastname@example.org.