NOVEMBER is Alpha-1 Awareness Month
Thanks to everyone who has supported TEAM MITCH as we continue spreading awareness and raising funds for research for Alpha-1 Antitrypsin Deficiency!
TEAM MITCH had a great turnout on November 17 for our first and what will become our annual walk for Alpha-1! The weather was a perfect sunny 60 degrees! We walked Pope John Paul ll Reservation in Boston, MA for 2 hours and in between enjoyed a tailgate/picnic lunch! We did our best to spread the word as 3 generations were joined together by the POWER TO CONNECT! I truly appreciated this day... the love and support of those around me gives me much needed hope and strength as I continue on my Alpha journey!
As I navigate through my year of “FIRSTS” as a newly diagnosed Alpha “ZZ” I am trying my best 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”.I recently attended my “FIRST” Support Group Leader training last month in Miami.
In September, my family and I participated in our “FIRST” Riding For A Reason on Cape Cod in conjunction with the American Lung Association’s Escape To The Cape!
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 8 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.
Please join my family and I in raising awareness and support for Alpha-1 Antitrypsin Deficiency by walking anywhere, anytime during the month of November!
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 continued support and help in raising awareness!
With heartfelt thanks, Lori
