Page ubdate:  It is that time of year again!!!! The Escape To The Cape bike treck is upon us once again and were are raising funds for a cure.  I will be riding this weekend for Team Alpha-1 and any donations you  make are greatly appreaciated.  Below is the money we have raised thus far.

Bike Trek 2007 = $2100

Bike Trek 2008 = $3000

Lottery for a Cure 2008 = $6000

Talecris Dress Down Day 2009 = $1500

I have set up this page to raise money in the name of my family members who have suffered from Alpha 1.  Please read the story below and understand how Alpha 1 impacts an entire family.   

An Alpha 1 Family

Alpha 1 has been present in my life since the day I was born; not only because I was born a carrier but because it has affected every single relative on my father’s side of the family.  Alpha 1 has taken many family members much too early in life which I will explain in detail later on in this story. Alpha 1 has also brought our family closer together than we could have ever imagined and has empowered many of us to take action and help in the Alpha 1 community whenever we can.  Hopefully by hearing this story you will see the need to help in any way you can whether it is financially, through volunteer programs or through education. 

My grandparents on my father’s side William and Barbara had five children including my father.  Barbara died in 1969 at the age of 46 from what her physicians determined was severe emphysema.  At that time neither her physicians nor any family members knew of Alpha 1.  It was later determined that my grandmother was a ZZ.  My grandfather William died at the age of 62 from heart and kidney failure.  It was later determined after his death that he was an MZ.  Together they left behind five Alpha children: Bill, Ed, Jim, Anne, Geoff. 

My father’s oldest brother, My Uncle Bill was diagnosed as an Alpha ZZ in the late 70’s.  He died at the age of 47 in the early 80’s.  He was on a number of medications to manage his lung disease, but did not have the benefit of augmentation therapy.  He was exploring the option of transplant which at the time involved both lungs and heart.  Unfortunately he became too unhealthy and could not be listed. 

My dad’s next brother, Uncle Ed is a carrier (MZ) and is currently 62 years of age.  He was born prematurely and weighed only two pounds two ounces at birth.  Although he suffered from childhood asthma and currently has some reduced lung function, he is perhaps the healthiest member of the family. 

My father’s only sister, Aunt Anne passed away at the young age of 46 from Alpha related lung disease which was complicated by diabetes.

His youngest brother, Uncle Geoff has the most tragic story of them all.  Uncle Geoff passed away at the at the age of 47 from Alpha related lung and liver disease.  Unfortunately, his physical condition and the emotional problems he had related to Alpha 1 had a great impact on how he managed his condition.  His wife, Aunt Mary is a carrier of the Alpha 1 gene and they had three children: Geoff, Greg, and Amy and all were diagnosed as ZZ Alphas. 

Their first child, Geoff died at the age of 2 from what was diagnosed at the time as leukemia.  We now know it was Alpha related liver disease.  Also at the age of 2 their only daughter, Amy was diagnosed with Alpha related liver disease and was given a very poor prognosis.  She was placed on a transplant list and received the gift of a new liver at the age of 5 and she is now a happy healthy 15 year old cheerleader.  Their other son Greg is an asymptomatic ZZ who is currently 22 and very healthy. 

Given my dad’s family history he is very fortunate to be alive today at the age of 56.  He was diagnosed in his late 30’s and started augmentation in his 40’s.  His lung function slowly deteriorated over time.  His ability to do the simplest of tasks diminished, His daily use of supplemental oxygen was increased until he was on 6 liters, 24 hours a day.  It would take him 3 hours to get himself together in the morning so he would be able to go to a job he loved, a school principal.  Then on May 31, 2006 he received the gift of a new life through a double lung transplant at the University of Pennsylvania.  More importantly two weeks after his transplant he was able to dance with my mother at my wedding. 

As you have read, we have had a solid run with how Alpha 1 affects a family but I have one more piece to add.  About a year ago when my wife and I were discussing having children we decieded to have her tested for Alpha-1 and low and behold she came back as an MZ just like me.  We discussed what could happen when we have children and the odds that our children would be affected with Alpha-1 and decided to go ahead and take our chances since after all there will be a cure one day.  On April 29, 2009 my wife and I welcomed into the world our son and MZ, Caden. 

Based on my family history I have made it my life’s mission to do everything I can for the Alpha 1 community through education, detection, and awareness which will eventually lead us to find a cure.  With your Donation we will come that much closer to reaching our goal of finding that cure because 100% of the money raised goes toward the reasearch needed for a cure.