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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


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