News Archive

Team Alpha-1 brings home 5 medals and a message: ‘Be a voice for organ donation’

Team Alpha-1 took home a pretty good haul from last week’s Transplant Games of America: two gold medals, a silver, two bronze, and enough inspirational stories to last until 2016, when the Games are in Cleveland.

Joanne Mellady, attending for the first  read more…

Alaska community holds fundraiser to help former DJ get home, closer to lung transplant

After lending her support to dozens of community fundraisers over the years, it’s former on-air radio personality Becky Nichols’ turn to be on the receiving end of that generosity.

Nichols, originally from Maine, has lived in Anchorage,  read more…

For 6th Paul Healy Memorial Golf Tournament on Aug. 11, family hopes it’s another ‘perfect day’

On Aug. 11, Bob and Pattie Healy will celebrate their brother, Paul, by doing what he loved most: playing golf.

The 6th annual Paul Healy Memorial Golf Tournament will be held at the Halifax Country Club in Halifax, MA. All proceeds will go  read more…

Alpha-1 clinical resource centers get top specialty ranking in ‘U.S. News’ annual hospitals report

U.S. News & World Report has released its annual rankings of the best hospitals for 2014, and Alpha-1 Foundation Clinical Resource Centers scored high.

The report looked at data for nearly 5,000 hospitals and results from surveys of more than 9,500 physicians to  read more…

Global Genes to hold Rare Patient Advocacy Summit Sept. 11-12 in Huntington Beach, CA

The Global Genes Project’s 3rd Annual RARE Patient Advocacy Summit will be held Sept. 11-12 at the Hyatt Regency Resort & Spa in Huntington Beach, CA.

It’s a chance to learn all about being a patient advocate, proactive and productive in efforts to  read more…

Lung experts issue statement on
e-cigarettes, urging restrictions until further research done

Experts from the world’s leading lung organizations have released “Electronic Cigarettes: A Position Statement of the Forum of International Respiratory Societies,” published online in the American Journal of Respiratory and Critical Care Medicine on July 9.

The statement focuses  read more…

Alpha-1 Foundation clinical resource center to hold pulmonary symposium
Sept. 13 in Pasadena, CA

The pulmonary division of University of Southern California’s Keck School of Medicine, one of the Alpha-1 Foundation’s 84 Clinical Resource Centers, is sponsoring a pulmonary symposium, “2014 State of the Art,” on Saturday, Sept. 13 in Pasadena, CA.

The program,  read more…

Thanks to a friend, Maine Alpha, 10, will get life-saving liver transplant

A 10-year-old girl from Waterboro, Maine, found out on Monday she will get the gift that will save her life.

Camryn Richards, who was recently featured in a story on ABC affiliate WMTW-Channel 8, has Alpha-1 liver disease, was  read more…

The Alpha-1 Foundation announces
2014-15 grant funding opportunities

Members of the medical, research and scientific communities are invited bring the cure for Alpha-1 Antitrypsin Deficiency within reach by participating in the Alpha-1 Foundation’s research programs.

Get complete information about our research opportunities, application deadlines, application forms and letter of  read more…

Kaiser report calls Obamacare outreach effort ‘impressive’ in first enrollment period

More than 4,400 consumer assistance programs created under the Affordable Care Act helped an estimated 10.6 million people explore their new health insurance options and apply for coverage during the initial six-month enrollment period, according  read more…

In first meeting, PCORI’s new Advisory Panel on Rare Disease sets priorities

The new Advisory Panel on Rare Disease of the Patient-Centered Outcomes Research Institute (PCORI) held its first meeting on April 30 to establish its agenda.

The 13-member panel, chaired by Marshall Summar, MD, is charged with helping PCORI decide how to best manage its  read more…

After Miss Florida USA pageant, Nicole Perlstein is continuing Alpha-1 awareness efforts

After months of preparing for the Miss Florida USA pageant, “it’s back to work and time to take off the platform heels,” Nicole Perlstein says cheerfully.

Perlstein, who was crowned Miss Vero Beach USA in March, did not win  read more…

Patient voice vital in drug development, NORD’s Summar tells House panel

Marshall Summar, MD, board member and scientific adviser for the National Organization for Rare Disorders (NORD), underscored the importance of the patient voice in the drug discovery and development process in testimony Friday at a House Energy & Commerce  read more…

For Team Alpha-1, competing
in Transplant Games is one more
reason to be grateful

In two days, the four members of Team Alpha-1 will be heading to Houston, Texas, where they will compete in the 2014 Transplant Games of America, July 11-15.

They’re coming from the North, South, West and Midwest, but they all share  read more…

Read Alpha-1/COPD Foundation president’s ‘Voice of the Patient’ column in Journal of Thoracic Disease

Since August 2012, the Journal of Thoracic Disease has been collaborating with the International COPD Coalition (ICC) in publishing a regular column with input from chronic obstructive pulmonary disease (COPD) patient organizations, lung physicians and other COPD experts worldwide.

A June 11  read more…

Hiking for a cure, Connecticut Alpha has 700 miles to go, $1,000 to raise

Ten states. Four months. About 1,495 miles behind him and about 690 miles to go, Jonathan Maidment spent the Fourth of July holiday weekend back in his home state of Connecticut.

Maidment, a third-generation Eagle Scout who is raising awareness and money for  read more…

Public input sought on paper addressing donor liver distribution; comments due July 11

The United Network of Organ Sharing (UNOS) Liver and Intestinal Organ Transplantation Committee is seeking public input just released a concept paper suggesting the redistribution of deceased donor livers from a regional basis to either a four- or eight-district  read more…

Alpha-1 community invited to join Appalachian Trail hiker in Connecticut on July 4

Ten states. Four months. About 1,495 miles behind him and about 690 miles to go, Jonathan Maidment was back in his home state of Connecticut for Independence Day.

Maidment, an Eagle Scout who is raising awareness and money for the Alpha-1 community  read more…

In NIH study, researchers use supercooling technique to preserve liver for transplant

Researchers have developed a new supercooling technique to increase the amount of time human organs could remain viable outside the body. This study was conducted in rats, and if it succeeds in humans, it would enable a world-wide allocation of  read more…

Alpha One Foundation of Ireland unveils new website

The Alpha One Foundation Ireland has redesigned its website. In its updated format, the Foundation will provide news and events of interest to the Alpha-1 community, as well as the latest research information.

The website will also have the Alpha-1 Foundation’s  read more…