The Alpha-1 Channel

Alpha-1 All The Time!

Our Mission...

The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency.

Q: What is Alpha-1?

A: A hereditary condition which can cause lung disease in adults and liver disease in people of all ages.

World Spirometry Day is Oct. 14, part of Year of the Lung celebration

COPD Foundation

The Federation of International Respiratory Societies have declared Oct. 14 World Spirometry Day to celebrate lung health during the Year of the Lung.

This coordinated event to deliver free spirometry helps raise awareness for lung disease around the world. Spirometry is a simple diagnostic tool that can be utilized to screen for lung diseases like COPD. Everyone who has a stake in raising awareness of lung disease, COPDers and providers alike, have a role to play in this event.

Events that are being planned will be logged on the World Spirometry Day website

Do you want to be a part of the World Spirometry Day Festivities? Check out the World Spirometry Day calendar for an event near you. And if you don’t see an event registered in your area, you can start your own! There are organizing kits available on the World Spirometry Day Website. If you are not a health professional, contact your doctor’s office or local hospital or community center or any of the partner organizations to help.

The kits include guides to run a mass spirometry events in a hospital setting and in a community setting, sample media kits for contacting the press, promotional materials that can be used for marketing (banners, signs, t-shirts, etc.), questionnaires and forms to be used for testing and education fact sheets on spirometry screening, living with COPD and smoking and lung disease. The kits are all downloadable form the above website, personalized for your event and reproduced as needed.

What can you do if you are not a health professional? You can help organize the place and date, coordinate the medical professionals and the equipment needed to do the testing, market the event by contacting the media, help fundraise to pay for the event, and coordinate educational materials about the importance of lung health and lung diseases.

Foundation congratulates Baxter, Kamada on agreement to distribute augmentation therapy; hopes for closer relationship with community

MIAMI – The Alpha-1 Foundation today congratulated Baxter International and Kamada Ltd. on their new agreement for the distribution and manufacture of Kamada’s intravenous alpha-1 antitrypsin product Glassia for treatment of Alpha-1 Antitrypsin Deficiency.

Baxter will have exclusive rights to Glassia in the United States, Australia, New Zealand and Canada. Kamada, an Israeli biopharmaceutical company, developed Glassia, which was approved in July by the US Food and Drug Administration.

“We are pleased that Baxter, with its extensive experience in the Alpha-1 market, has contracted for the distribution,” said Foundation President & CEO John Walsh. “We are hopeful that this agreement will provide an opportunity for much closer cooperation with the Alpha-1 community. We also hope that this agreement will assist Kamada in accelerating the development of aerosolized therapy for Alpha-1.”

Walsh added that the Foundation has been closely involved with supporting the development of Alpha-1 augmentation therapies, clinical trial design and recruitment, with its clinical leadership and individuals in the Foundation’s Alpha-1 Research Registry

Download the full press release on our WEBSITE.

Team Harley Runs for a Cure

Owatonna People’s Press

OWATONNA, MN — In one respect, Team Harley’s goal was simple: All they wanted to do was finish the Owatonna Rotary/Steele County Free Fair 4-Mile Run. But there’s a lot more to it than that.

The family ran with the hope that dad and granddad Harley Janke will be well enough to see them cross the finish line next year, too.

To that end, they donned personalized T-shirts (emblazoned with “Run 4 Poppa”) and took to the road on Saturday.

CHECK OUT THE FULL STORY

Alpha-1 is solving crimes - on TV that is

Last week’s episode of the new TNT crime show Rizzoli & Isles features Alpha-1 Antitrypsin Deficiency.

In fact, Alpha-1 is the key to solving the crime.

Rizzoli & Isles is about the friendship between two women, Detective Jane Rizzoli and Coroner Maura Isles, and their teamwork in solving criminal cases.

The episode starring Alpha-1 is called “Money for Nothing”.

The eldest brother in a wealthy Boston family is found in the harbor dead after an apparent sailing accident. But this wouldn’t be a crime show if it didn’t turn out to be a murder.

And how does Alpha-1 come in?

Almost at the very end of the show, Isles reveals a fact that suggests a motive for murder—and proves that one of the “brothers” in the family wasn’t really a brother, after all.

One of the brothers had Alpha-1 Antitrypsin Deficiency (apparently a ZZ) and another brother had no Alpha-1 genes. So they couldn’t really be brothers, right?

An Alpha doc would likely find all this over-simplified, but hey, this is a TV drama. And Alpha-1 DOES get credit for helping to solve the crime. What more can we ask?

WATCH THE VIDEO

Medicare funding may last till 2029 due to healthcare reform

The outlook for Medicare has improved substantially because of program changes made in the federal healthcare reform act (Patient Protection and Affordable Care Act), says the annual report of the Trustees of the Social Security and Medicare trust funds.

Despite the economic recession, the Medicare Trust Fund is now expected to remain solvent until 2029, 12 years longer than was projected last year.

Much of the projected improvement in Medicare finances is due to a provision of the ACA that reduces payment updates for most Medicare goods and services other than physicians’ services and drugs.

FULL STORY

COPD Foundation backs bill to improve VA programs for prevention and treatment of COPD

WASHINGTON—The COPD Foundation has sent a letter of support to Rep. Cliff Stearns, R-FL, on a new bill to improve Veterans Administration programs for chronic obstructive pulmonary disease (COPD).

Stearns is co-chair of the COPD Caucus and co-sponsor of the bill, HR 5996. It would direct the Secretary of Veterans Affairs to improve the prevention, diagnosis, and treatment of veterans with chronic obstructive pulmonary disease.

The House Committee on Veterans’ Affairs will hold a hearing on the bill Sept. 29.

We've got the COPD LETTER on our Website!


Foundation thanks Alphas for joining "Virtual Lobby Day"

Many Alphas from across the United States joined the first “Virtual Lobby Day” held by the American Association for Respiratory Care (AARC) Aug. 4.

On Virtual Lobby Day, patients and patient advocacy organizations joined respiratory therapists and other professionals to send personal messages to Congress. The focus of the messages was for Congress to support the Medicare Respiratory Therapy Initiative (HR 1077 and S 343).

These bills would provide for Medicare reimbursement for respiratory therapists working with physicians, but not necessarily under the physician’s direct supervision.

Alpha-1 Foundation President & CEO John Walsh expressed his personal thanks to the Alpha-1 community. “We are grateful for the participation and support of Alphas across the country in making Virtual Lobby Day a great success,” he said. “We are proud to support the expanded use of the skills of respiratory therapists, the health care professionals who have helped so many of us, often at critical moments in our health history.”

Welcome to the Alpha-1 Channel - Alpha-1 All The Time!

New Alpha-1 Foundation Video Blog

Ever wonder what it is that we all do at the Foundation?

What's going on in research?

Where are the upcoming events?

Got any new information available?

Well, now you can get an inside glimpse of our every day tasks, and keep up to speed with all our projects.

Welcome to: The Alpha-1 Channel - Alpha-1 all the time!

Our video blog (Vlog) will take you inside the Alpha-1 Foundation. Meet our staff, find out what's going on in your neighborhood, learn about what's new in our programs and send us your feedback.

We're glad to have you on board! Stay tuned!