News
Alpha-1 kids, families help set attendance record at national conference; Foundation reaches Million Dollar Match goal
ORLANDO, FL—Nearly 30 Alphas brought their families along, and a record 630 people attended the 19th annual Alpha-1 Association National Education Conference over the weekend.
Alpha-1 Foundation President & CEO John Walsh announced that the Foundation recently reached $1 million in revenue from fundraising events this year—achieving the goal for the Million Dollar Match.
This was followed by another major highlight of the conference: a million-dollar donation to the Foundation for research. Ruth and Gordon E. Cadwgan, Jr., announced the donation from themselves and Gordon Cadwgan, Sr.
Gordon Cadwgan, Jr., a Foundation board member, explained the timing of the family’s donation: “My dad, who’s 96, said, ‘I want to make a difference while I’m still here!’”
MAKING A DIFFERENCE NOW—Ruth and Gordon E. Cadwgan, Jr., announce a million-dollar donation from themselves and Gordon’s father, Gordon, Sr.
The conference was themed around family testing for Alpha-1 Antitrypsin Deficiency. Both the Alpha-1 Association, with a new video DVD series, and the Foundation, with the “It’s All in the Family” program, were featured. Both aim at helping Alphas to explain Alpha-1 to their families and encourage them to consider testing for Alpha-1.
CLIFFORD AND THE KIDS—Clifford the dog greets two of his young fans during the Alpha-1 education conference this weekend.
With the number of children attending also setting a record (drawn in part by Walt Disney World right next to the conference hotel), the program included several talks focused on families, including talks on Alpha-1 pediatric liver disease and one on “How to Talk to Your Children About Alpha-1.”
The Alpha-1 Kids volunteers set up a special room for children at the conference, with games, entertainment and activities available so parents could more easily attend education sessions.
The Foundation also distributed its “Liver Report to the Community” at its booth during the conference.
The Million Dollar Match, announced in 2009, set a goal of raising a million dollars by June 30, 2010. It was made possible by a generous grant from Talecris Biotherapeutics, which matched every dollar donated up to a million dollars for the year. All the money was earmarked for research, since all the fundraising costs were met by a portion of the AlphaNet donation to the Foundation.
EVENT TRAINING—Angela McBride talks about planning an event for Alpha-1 awareness and fundraising during the Building Friends for a Cure presentation Friday.
The conference opened Friday with Foundation Director of Development Angela McBride giving a training on fundraising as part of the Building Friends for a Cure program.
Friday evening, Jeff Teckman, MD, received the Advancement of Research Award; William F. Reese, who died last week, was honored in memoriam with the Alpha-1 Community Appreciation Award; and Pamela Schreck of the University of Florida received the Kathleen M. McKay Excellence in Nursing Award.
The Foundation also presented its Building Friends for a Cure awards to its Team Alpha-1 All-Stars and its Star of Excellence awards for community events.
AT THE BOOTH—Foundation staffers were flooded with requests for T-shirts and other materials during the conference. From left are staff members Francisco Pena, Michelle Naples, Pamela Arango and Diego Shmuels.
Saturday night, the Cadwgans received the Sandra K. Brandley Leadership Award for their service as support group co-leaders and their generous support, education and advocacy efforts for Alpha-1, and took the opportunity to announce their major donation to the Foundation for Alpha-1 research.
John Walsh received the Peter Smith Achievement Award for his years of leadership in the community and “leading the charge to find a cure for Alpha-1.”
ACHIEVEMENT AWARD—Marlene Erven, executive director of the Alpha-1 Association, and Ed Brailey, center, chair of the Association board, present the Peter Smith Achievement Award to John Walsh.
The late Bob Haggerty, longtime treasurer of the Association, was honored with the Inspirational Award.
Other award winners:
Board of Directors Dedication Award to Darrell Nall and Don Rabush; Special Appreciation Award to Angela McBride; Physician Appreciation Award to Mark Brantly, MD; Claude Baril Communications Award to Jen Baurenfeind; Special Recognition Award to Jan Petersen, who chaired the Association Board from 2005-2010.
John Mulvihill, MD, of the University of Oklahoma, gave the keynote talk Saturday on “Genetics as Your Partner,” including a discussion on newborn screening for Alpha-1.
A panel discussed Alpha-1 Family Awareness and Testing, and Walsh gave an update on Alpha-1 research. Miriam O’Day, senior director, public policy, for the Foundation and Association, talked about health care reform, especially those reforms that have benefited the Alpha-1 communities and others with rare and chronic diseases.
Saturday afternoon breakout sessions included talks on infectious diseases and Alpha-1, the Lung Transplant Allocation System, and helpful hints for caregivers.
Two new scholarships were awarded:
The John (Jack) W. Walsh, III scholarship of $2,500 to Zachary William Bruce; and the Robert (Bob) Haggerty scholarship of $2,500 to Kelly Joy Finch.
Peter Smith Scholarship recipients were Ethan Patrick Hartnett, Doreen Flook, Tiara Johnson, Tiffany Bower, Erin Govey, Christopher Mulhoek, and Matthew Colbran-Patterson.
Conference core sponsors were Baxter BioTherapeutics, CSL Behring and Talecris Biotherapeutics; major conference sponsors were Kamada Pharmaceuticals and Centric Health Resources.
Building Friends for a Cure awards
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