Top Stories

Published on Friday, July 24, 2015

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

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

The 24th annual National Education Conference of the Alpha-1 community officially began Friday afternoon with a two-hour "Meet the Experts" session at which Alphas were offered the chance to ask questions about both the lung and liver diseases of Alpha-1 to physicians who specialize in both those fields.

Jonathan Maidment tells about his 6-month walk on the Appalachian Trail.

All the doctors involved headed one of the Foundation's Clinical Resources Centers (CRC). There are more than 80 CRCs across the United States, each with doctors experienced in treating Alpha-1, many of them also researchers. The annual CRC Forum, held to update CRC physicians on current developments in research and clinical practice, was held Friday morning in conjunction with the Conference.

Even before it officially opened, the Conference had its first inspirational hit, when Connecticut  Alpha Jonathan Maidment spoke at the lunch sponsored by Grifols about walking the complete Appalachian Trail, some 2,200 miles over two months, in 20414 when Jonathan was 19.

Jonathan, who raised more than $56,000 for the Foundation's research programs, talked about deciding to walk the Trail in honor of his grandmother, who died of Alpha-1 lung disease. He described being forced to take two weeks off from the walk after injuring his feet on the rocky trail; of arriving home after completing the walk, catching up on weeks of old emails, and finding one from his grandfather, who died during Jonathan's walk; and his most frightening experience with animals, not from wildlife, but from a herd of cows he met during the walk, when the whole herd began to chase him down the trail till her made it over a fence.

Jonathan said he is now studying at a local junior college, and when he graduates he plans to walk the Pacific Crest Trail, which is several hundred miles longer than the Appalachian Trail, and runs over mountainous terrain as high as 13,000 feet above sea level.

The stars of Friday morning's breakfast, sponsored by Baxalta, were cartoon characters Mickey, Goofy and Pluto, who entertained both children and adults and posed for photos with many of them.

A session on Community Engagement was an afternoon highlight. Community leaders including AlphaNet Coordinators, all of whom have lung disease related to Alpha-1, support group leaders, fundraising volunteers and Alpha-1 Foundation staff led a session on the key roles that volunteers play in the community, and the many ways that Alphas and their families can get involved, from simply joining a support group to fundraising to advocating for legislation that can help to improve the health and quality of life for Alphas.

Kamyar Afshar, DO, of the University of Southern California, and Jeffrey Teckman, MD, of the University of St. Louis, gave talks on "Alpha-1 Antitrypsin Deficiency 101" on the lung and liver diseases of Alpha-1.

Jean-Marc Quach, executive director of The Alpha-1 Project (TAP), the Foundation's venture philanthropy subsidiary, gave an update on progress in research in which TAP has formed partnerships, including clinical trials begun by Arrowhead Research which has begun a clinical trial of a potential liver therapy in Australia,  and Alnylam Research, which has applied for approval for a trial in the U.K. of its own potential liver therapy.

Robert Sandhaus, MD, PhD, clinical director of the Foundation and medical director of AlphaNet, gave a talk on "Patient Centered Research, What We Do and Where You Fit In," encouraging Alphas to express their needs and opinions to federal authorities in charged of the FDA's new "Patient Centered Research" program.

After hospitality suite receptions by Baxalta, CSL Behring and Grifols, the presenting sponsors of the Conference, a dessert hour followed, with presentations of the Foundation's Building Friends for a Cure awards.

On Thursday, CSL Behring presented its 8th annual "Walk for Breath" celebration at Astor Classics, a museum for classic cars. At dinner, Kevin Kovaleski of CSL encouraged everyone attending to consider signing up for the company's new "My Steps for Healthy Living" program, and praised CSL's partnership with AlphaNet to provide health management services to Alphas with lung disease.

Kovaleski said the "My Steps" program suggests regular walking with a goal of adding 10 percent more steps each month. He introduced Dee Meisner, a Florida Alpha "with an incredible goal."

Meisner, a police officer for 23 years, began climbing mountains in the United States, "starting with little ones, about 3,000" feet, she said. She told about her attempt last year to reach Camp Muir on Mount Rainier in Washington State. She climbed to 9,500 feet before exhaustion and oxygen desaturation forced her to stop.

And she promised, "This August, I plan to make it all the way to Camp Muir, an altitude of more than 10,00 feet!"

The Presenting Conference Sponsors are AlphaNet, Baxalta, CSL Behring and Grifols. Dohmen Life Science Services is the Lead Conference Sponsor.

Building Friends for a Cure awards


Alpha-1 Foundation’s position and the Zemaira shortage

Monday, October 29, 2018
It has been brought to the attention of the Alpha-1 Foundation that CSL Behring has been experiencing delays in the distribution of Zemaira for several months now. The Foundation bases its knowledge of this situation solely on the information...

Dohman Life Science Services to be renamed to EVERSANA

Thursday, October 4, 2018
The fast-growing life science services platform built in partnership with Water Street Healthcare Partners and JLL Partners unveiled its new name and brand: EVERSANA™. A combination of the Latin word "sana" for healthy and...

Inhaled alpha-1 antitrypsin: Kamada receives positive advice on new Phase 3 study design

Tuesday, July 17, 2018
Kamada Ltd., a plasma-derived protein therapeutics company, announced that it has received positive scientific advice from the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA), related to the development...

2018 research grants on Alpha-1 awarded

Tuesday, May 22, 2018
At a cocktail reception the evening of May 21st, held at The Prado at Balboa Park, within the framework of the American Thoracic Society (ATS) 2018 International Conference in San Diego, California, the Alpha-1 Foundation (A1F) announced the...

Alpha Jonathan Maidment hikes the Pacific Crest Trail

Thursday, May 17, 2018
This story appears in the Spring 2018 issue of Alpha-1-To-One Magazine. Subscriptions are free. Determined and driven are the first two adjectives that come to mind when you get a grasp of the endeavor that 23-year-old Jonathan Maidment has...

Teresa Kitchen in the spotlight for National Nurses Week

Friday, May 4, 2018
Teresa Kitchen, RN, was mixing Terry Young’s augmentation infusion when he got the call: his new lungs had arrived, and he needed to rush over to the hospital for his transplant. Barnes Jewish Hospital in St. Louis, MO, was right across...

Happy 25th transplant anniversary to Mary Pierce

Monday, April 2, 2018
This is an excerpt of a story that originally appeared in the Spring 2013 issue of Alpha-1-To-One Magazine. Mary Pierce was diagnosed with Alpha-1 on her 40th birthday, Feb. 16, 1987. She’d been home sick from work for about a week...

In honor of Bruce Parker

Friday, March 30, 2018
The Alpha–1 community, including AlphaNet and the Alpha–1 Foundation, is grieving the loss of our friend, and AlphaNet REACH program coordinator Bruce Parker, from Chattanooga, TN. Bruce, who was also an Alpha, parted on March 28, 2018...

Alpha-1-To-One Magazine is in the mail - The true cost of competitive bidding

Thursday, March 22, 2018
This article appears in the Spring 2018 issue of Alpha-1-To-One Magazine. The multiphase competitive bidding program began in January of 2011 with the purpose of ensuring Medicare beneciaries access to quality supplemental oxygen products and...

Spark Therapeutics explores payment options after revealing price tag for first gene therapy in the US

Thursday, January 4, 2018
Philadelphia based pharmaceutical company, Spark Therapeutics, confirmed conversations with the U.S. Centers of Medicare and Medicaid Services on a proposal that would allow for multi-year payment plans for its innovative treatment, Luxturna, the...

Arrowhead Pharmaceuticals submits for regulatory clearance for first-in-human study

Friday, December 29, 2017
Arrowhead Pharmaceuticals Inc. announced that it filed a regulatory submission to begin a first-in-human study of ARO-AAT, a second-generation investigational medicine for the treatment of Alpha-1 liver disease. Pending approval, Arrowhead intends...

ATS renames PAR Excellence Award after John W. Walsh

Wednesday, December 13, 2017
The American Thoracic Society (ATS) Public Advisory Roundtable was moved to rename the annual PAR Excellence Award by a unanimous vote in November. The award, presented at the ATS International Conference, will now be referred to as the...

Article Search

Enter keywords in text box and click Search button for results.