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What is Alpha-1?

"Alpha-1 Antitrypsin Deficiency (Alpha-1) is an inherited condition. People with Alpha-1 have received two abnormal alpha-1 antitrypsin genes, one each from their mother and father. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. Alpha-1 affects approximately 1 in 2,000 to 1 in 5,000 individuals but it is often misdiagnosed or incompletely diagnosed because the initial symptoms seem like other conditions, such as asthma or chronic obstructive pulmonary disease (COPD). There is no cure for Alpha-1, but once diagnosed by a blood test, there are several treatment options."

The World Health Organization (WHO) and the American Thoracic Society (ATS) recommend Alpha-1 testing for anyone with COPD, emphysema, chronic bronchitis, uncontrolled asthma, unexplained liver disease (including children), or panniculitis.


The Alpha-1 Foundation is the premier location for Alpha-1 info on the web. At the center of much research and education, the Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. The Foundation's website is comprehensive and reliable:

Informative Brochures
Each in "pdf" format. If you need the free PDF Reader, visit acrobat.adobe.com. Choose the free Acrobat Reader DC, not the Pro version.

New Excursions section:
All New England Alphas and their circles of loved ones are invited to share: support group schedules and other info, featured events, Alpha-1 stories, exercise routines, handy tips, photos, recommended articles, personal writings, poems, jokes, and anything else I've missed.
Alpha groups beyond New England are welcome to send their website address for our Links page. My email address is petertc2@cox.com. Looking forward to years and years of service.
-Peter Cook
Jamestown, RI


  • Follow any links to original sources to make you own judgements
  • Check in with a support group
  • Be sure to consult your physician before acting on any material shared on this website

On a personal note, I've been way pleased with my infusions over at Newport Hospital. Sam Evans, my pulmonologist, is everything I hoped for in a specialist - keen intelligence and patient-centered "like the old days". Everyone on the staff at the Infusion Center has been wonderful. They're knowledgeable, efficient, and caring. I've told them that it's their heart, their love that keeps me going. One of the nurses has a son the same age as my grandson. It's fun to compare photos and stories. I've been making paracord bracelets for the staff and other infusion patients, taking a bag of bracelets in every week. All the extra clippings from the bracelets are already going to our two 6 year olds. Bracelets celebrating the winter holiday season are donated to the Dr. Martin Luther King Jr. Community Center in Newport.


Noteworthy

Cape Cod COPD Support Group
Wednesday, September 12th, 2pm
Orleans Senior Center
50 Rock Harbor Rd
Orleans, MA 02653

Speaker: Marc Buontempo, Senior Sales Rep for Grifols Pharmeceutical company
Topic: Alpha-1 Antitrypsin Deficiency

Refreshments will be provided.

Alpha-1 Mainers Support Group Meeting
Saturday, September 15th, 10am-2pm
Maine General Hospital, Classroom 1
35 Medical Center Parkway
Augusta, ME 04330

Speakers: Judy Couture and Brett Hoskins, Support Group Members
Topic: Life Pre & Post Liver and Lung Transplant

Lunch will be provided at Lunch at Margarita’s Restaurant, 390 Western Avenue, Augusta, ME 04330
For more information or to RSVP by August 30th, contact Support Group Leaders:
Brian Pelletier at (207) 551-7003 or email at bjpslp@yahoo.com or Valarie Hale at (207) 432-0962 or email at alpha1val@gmail.com
Connecticut Nutmeggers Support Group Meeting
Saturday, September 15th, 12-2:30 pm
Hospital for Special Care
2150 Corbin Avenue
New Britain, CT 06053

Speaker: Maureen McIntyre, Chief Executive Officer, North Central Area Agency on Aging
Topic: Navigating Medicare

Lunch will be provided. (Please refrain from wearing colognes or fragrances).
For more information or to RSVP by September 7thth, contact Support Group Leaders:
Faithe Petty at (860) 537-2668 or email at fspetty@sbcglobal.net.
or Chris Town at (203) 605-9150 or email at town.chris@sbcglobal.net
Massachusetts Alpha-1 Support Group Meeting
Saturday, October 18th, 7-9pm
Wingate Nursing Home
589 Highland Avenue
Needham, MA 02494

Speaker: TBA
Topic: TBA

Dinner will be provided.
For more information or to RSVP by October 16th, contact Support Group Leaders:
Judith Vargas-Vila at (978) 371-9782 or (978) 505-7145 and Richard Vargas-Vila at (508) 654-6514 or email: quelmars@gmail.com
Escape to the Cape
Wednesday, September 28th - 30th

Raise funds for Alpha-1 research. Alpha-1 friends & family bike 160 miles over 3 days. (105 over 2 days option)
Watch the video. Register here.

The Assistance Fund adds Alpha-1 Antitrypsin Deficiency Financial Assistance Program
The Assistance Fund has added Alpha-1 to its list of conditions they help that have high medical out-of-pocket costs.
To learn more and determine eligilbility for financial support, visit www.tafcares.org or call The Assistance Fund at 855-275-9030.
New Shingles Vaccine
For everyone 50 years old or older
Even if you've already had the previous Zostavax vaccine, it's recommended you get the newer 2-stage Shingrix vaccine, which is 90% effective compared to Zostavax 51%.
Read full story.
Better and Better and Better

Fred Walsh, long-time AlphaNet coordinator for Mass. and RI and twin brother of the late John Walsh, is doing well after a double lung transplant. Here's Fred at this year's Escape to the Cape bike trek.