Please join us in our efforts to support The Alpha-1 Foundation!

This is my first ride with Alpha-1 Riding For A Reason.  As a newly diagnosed Alpha “ZZ” I am trying to stay positive while learning all I can about my diagnosis.  I attended my first Alpha-1 Foundation National Conference in Miami this past June.  The support and encouragement I received and the knowledge I was able to gain was incredible.  I am proud to be a co-support group leader, re-starting the MA/RI support group now named, “MassAlphas”.

Alpha-1 Antitrypsin Deficiency is progressive.  There is no cure.  Alpha-1 can cause serious lung and/or liver disease and as a result I have been diagnosed with moderate -severe Alpha-1 related COPD and emphysema resulting in loss of lung function.  

I have been receiving augmentation therapy for the past 5 months.  This is a weekly life-long IV infusion of alpha-1 antitrypsin protein that has been collected from healthy plasma donors.  I am so grateful to donors who unselfishly give their plasma to help Alpha’s.   It takes 900 donors to supply what is needed for just 1 patient’s yearly treatment.

This therapy will not restore my lost lung function.  The hope is that it will slow progression which can often lead to the need of supplemental oxygen or lung transplantation. 

I will be riding 25 miles (on an e-bike) alongside my husband and family members on Saturday, September 28.  Please help us raise awareness and show your support by donating to fund programs and research that will someday help find a cure!

Donating plasma is also a great way that friends and family members can support the Alpha in their lives!  Please consider plasma donation.  You can find centers in your area on this site:  donatingplasma.org

On behalf of myself and family, we thank you for your generosity and support.

Love,

Lori, David and Family