News & Events

Join Us at the Annual Alpha-1 Association Conference!

The Alpha-1 Association National Conference provides families invaluable information, support, and resources as they face the challenges of raising children affected by Alpha-1 Antitrypsin Deficiency.

SAVE THE DATE!!  The 2010 Conference will be held June 11-13 in Orlando, Florida at the Hilton Walt Disney Resort.  Registration forms for the conference will be available soon on the Alpha-1 Association's website at www.alpha1.org.  For those planning to attend, we are delighted to announce that Alpha-1 Kids is awarding one lucky family a week’s stay in a condo in Orlando immediately following the Conference, and Alpha-1 Kids is also offering scholarships for families attending the Conference.  Please contact Genevieve Paul at (305) 648-0088 ext 14 or  gpaul@alpha1.org to obtain a questionnaire/survey regarding the upcoming conference to have your name entered in the drawing.  You must complete and submit the survey by December 21th to have your name entered in the drawing for a FREE SIX night stay at a condo in Orlando sponsored by Alpha-1 Kids. The condo, which sleeps six, will be available beginning Sunday, June 13 and ending Saturday, June 19.   This drawing will be held on December 24th by Alpha-1 Kids Board Members, Dr. Don and Carol Rabush, and the lucky recipients will be notified between December 24th and January 1st.  (The survey will aide us in planning activities and services for you and your families at the upcoming conference.)

Alpha-1 Kids is a non-profit organization dedicated to providing services to families of Alpha-1 minor children. They are offering $500 scholarships plus Friday and Saturday night hotel accommodations for First Time Families Attending the Conference.  In addition, they are offering  Friday and Saturday night hotel accommodations for ALL families of Alpha-1 minor children.  The Alpha-1 Association will coordinate these scholarships on behalf of Alpha-1 Kids.  Please submit your name for these scholarships to Cathey Horsak at chorsak@alpha1.org or call her at 877.346-3212. 

Audio recordings and powerpoint slides from presentations from prior Alpha-1 Association Conferences are available at the Alpha 1 Assocation's website at http://www.alpha1.org/education/eed.php

Telecall conferences for Alpha-1 Families!

The Alpha-1 Association in partnership with Alpha-1 Kids periodically hosts a telecall conference regarding issues pertaining to Alpha-1 families.   For more information, please call Genevieve Paul at 1-800-521-3025 ext 14 or email gpaul@alpha1.org.

 Archives of Prior Telecalls

Audio recordings of prior telecalls are available from the Assocation. Send an email to gpaul@alpha1.org to request a copy.  Our prior telecalls have included the following topics:

  • The science behind Alpha-1, including information regarding treatment and ongoing research for Alpha-1.  Dr. Teckman, a pediatric gastroenterologist in St. Louis, MO who specializes in Alpha-1 research, was the guest speaker.  Dr. Teckman also answered questions from the 25+ parents who participated in the call. 
  • Roundtable discussion between Alpha-1 parents concerning beneficial products, lifestyle, and healthy practices for everyday life.
  • Legal issues pertaining to Alpha-1 students in the public school setting, including information regarding accommodations under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act.  Stacy Castillo, an attorney and Board member of Alpha-1 Kids, was the guest speaker.
  • Talking to children about Alpha-1, including suggestions on how to explain Alpha-1 to your children in child-friendly terms.  The guest speaker was Dawn McGee, a certified genetic counselor. 
  • Roundtable discussion and planning for upcoming National Alpha-1 Association Conference.

More telecalls will be scheduled in the future, feel free to check back for more information!

Alpha-1 Kids Reintroduces Alpha 1 - Antitrypsin Deficiency Alphabet: From A1 to ZZ

orderbook Alpha 1 - Antitrypsin Deficiency Alphabet: From A1 to ZZ is being reintroduced to the Alpha community by Alpha-1 Kids. This short book is a positive and informative way to explain to your children about Alpha-1 and what it means to them. The author, Amy Jo Lindloff, is a mother of two Alpha-1 affected girls. She wrote this book to help her children understand what it means, and more importantly what it does not mean, to be an Alpha. You  may order online or contact info@alpha1kids.org to get your copy of the book today.