Thanks for taking the time to visit our webpage to learn about the Alpha-1 Foundation. When our daughter and son-in-law brought Cooper, our third-born grandson, home from the hospital he was jaundiced. However, we didn’t worry much since our first 2 grandsons, Tyler & Bryce, had also been jaundiced in the first days of their lives. However, we soon discovered that Cooper’s jaundice was not the “ordinary garden-variety” experienced by so many newborns. Much to our shock and dismay, we learned that Cooper had Alpha-1 Antitrypsin Deficiency (A-1ATD). Within just a few weeks after he was born he had developed total blockage of his liver. Cooper underwent surgery to have a liver biopsy to determine the extent of involvement, to rule out another congenital liver disorder and to confirm the diagnosis. We learned of the possibility of future liver failure requiring a liver transplant and also the risk of developing liver cancer.

Since this is a genetic disorder, everyone in our family was tested; as a result, we discovered that Bryce also has A-1 ATD. While we were initially devastated, in some respects we are fortunate that Cooper was diagnosed so early; otherwise we wouldn’t have known that 2 of our 3 grandsons had this disorder until they began to exhibit signs of advanced lung damage or liver failure. By then, it may have been too late to treat Bryce or Cooper. Thankfully, recently Cooper's and Bryce's liver tests are only slightly elevated when checked.
 
 We want to educate people about A-1 ATD. Here are the basic facts:
I. We all make a protein enzyme in our liver called Alpha-1 Antitrypsin (A-1 AT).
II. We also make another protein called neutrophil elastase (NE), which is secreted by our immune system's white blood cells, that circulates throughout our bodies to combat infections and kill bacteria and viruses.
III. This protein will not only destroy bacteria and viruses, but our own tissues as well.
IV. In most people, the A-1 AT protein binds to the excess circulating NE proteins and prevents them from attacking our own tissues.
V. Those few people with A-1 ATD, have hardly any A-1 AT protein to stop this destruction. As a result, their white blood cells secrete an enzyme that damages their own body: the most significant effect of this action is on the lungs. Any cold, pneumonia, pollution, smoke, etc., will cause injury to the lungs. The end result is premature emphysema or lung disease.
VI. So, too, the A-1 AT protein made in the liver is abnormally shaped, and causes blockage in the liver, which can lead to early liver failure necessitating a liver transplant and/or liver cancer.
 
It has been over 5 years now since we learned that Bryce and Cooper have A-1 ATD.   My wife (Linda and I), Terry and Jim, (our daughter and son-in-law)  want to do our part to try to help all those children who are born with this illness.

The Alpha-1 Foundation is our best hope in finding a treatment and possibly a cure.

The only current treatment is for those with advanced lung disease, which develops late in the disease process. There is currently no treatment to protect children who have otherwise healthy lungs.

Some excellent pharmaceutical trials were stopped, partly for financial reasons. Had such research been completed, scientists may have developed an inhaled form of the A-1 AT protein (just like inhalers used for asthma) that could prevent lung disease from developing. Hopefully, gene research will result in correcting the gene abnormality and prevent the liver damage as well. 
 
With the support of our family and friends, we’ll provide funds to the Alpha-1 Foundation to continue their research so as to help find a treatment, and possibly even a cure for all the children known as “Alphas”. 

The NYC Alpha1 swim team has agreed to help raise money for the Alphas through their English Channel challenge.  The swim team consists of five NYC professionals who have a passion for swimming.  In 2007, they completed a relay swim around Manhattan Island and this year decided to swim the channel.   They are led by their captain David Moore.   The rest of the team members are: Steven Reiss, Jeff Bodenmann, Steve Bookbinder, and Richie Abramson.   We thank them for providing this opportunity to help educate the public on this very rare affliction.

We also invite anyone who wants to do so, to join those who have made a financial contribution to this worthy cause.   Our family and all the brave “alpha” children – thank you for your generosity, kindness and support.
 

                               GIVING CHART

The English Channel is approximately 20 miles from Dover, England to Calais, France.    Sponsor the NYC Alpha-1 swim team per mile, by choosing the sea creature that matches your donation.

Goldfish           $1.25     X    20 miles  =  $25
Angel Fish       $2.50     X    20  miles =  $50
Star Fish         $5          X    20  miles =  $100
Dolphin            $12.50   X    20  miles =  $250
Orca Whale     $25        X    20  miles =  $500
Blue Whale     $X          X    20  miles =  $

Want to read more about the team or see a fabulous picture?     http://www.alphaone.org/news/theyll-swim-the-english-channel-and-while-theyre-at-it-theyll-raise-funds-for-alpha-1