The Alpha-1 Channel

University of Florida News Service
Eight years ago, he sat in his living room, tethered to oxygen, his lungs rapidly deteriorating from pulmonary fibrosis. If Tom Telford had not become Patient No. 199, he probably would have gone on this way, unable to breathe, until he died.

That year, 2002, Telford became the 199th patient to receive a lung transplant at Shands at the University of Florida. He can’t run a marathon and struggles walking up a flight of stairs, but Patient No. 199 is alive. But for many lung transplant recipients, a successful transplant does not always ensure years of survival.

“At five years post-transplant, only 50 percent of recipients survive,” said Telford, a semi-retired nuclear engineer who lives in Gainesville. “I was No. 199. I knew 195 to 205. I exercised with these people and got to know them. Now, many of those people are not alive. It is pretty depressing.”

To help change these statistics, the state of Florida has awarded a $1 million grant to UF to establish a lung transplant center and fund research projects focused on problems such as chronic rejection, the most common reason why patients die after a lung transplant. The center emerged in 2010 from the flagship lung transplant program.

“Of the solid organ transplants, the survival rate of lung transplants is unfortunately the lowest,” said Mark Brantly, M.D., division chief of pulmonary medicine in the UF College of Medicine and a director of research efforts for the new lung transplant center. “There are many challenges in transplanting lungs not the least of which is chronic rejection. We are looking to develop a multicollege research group that will help advance our knowledge about rejection and will develop new therapeutics to improve our patients’ lives.”

Brantly also directs the Alpha-1 Research Program at the University of Florida.

The event was held this past weekend, Oct. 1-3, on Cape Cod.

Team Alpha-1 consisted of 42 official riders and 48 volunteer supporters who helped with registration, sweeps, sag teams and medical support.

Participants in this “at-your-own pace” event, some of whom routinely ride with supplemental oxygen bottles carried on their bikes, had their choice of a two-day, 105-mile bike trek or three days and 160 miles along the Cape’s coast from Plymouth to Provincetown at the Cape’s northern tip.

Team Alpha-1 has won the annual “Silver Spoke” award for the largest team participating in the ride each of the three years the award has been offered. This year, riders came from New England, Colorado, Florida and New Jersey.

Sponsors of Team Alpha-1 are CSL Behring and Talecris Biotherapeutics, both of whom sent riders to participate.

See more photos HERE and HERE

A new website provides an introduction to the Genetic Information Nondiscrimination Act (GINA) and its protections for health insurance and employment.

It includes answers to common questions about GINA and helpful examples.

This online resource was created by Genetic Alliance, the Genetics and Public Policy Center at the Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics through funding by The Pew Charitable Trusts.

The GINA information website

Weinberg suggests that easy availability of information for patients—especially those with chronic health conditions—and involving patients in healthcare decisions, is needed to help lower costs.

We've got Weinbeg's article on our website!

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.

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.”

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.

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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

We've got the COPD LETTER on our Website!