Welcome to my Fundraising page for the Alpha-1 Foundation.
I am hoping to raise money to help find a cure for Alpha-1 Antitrypsin Deficiency or Alpha-1 for short. Alpha-1 is a genetic condition that can cause adults of any age to develop emphysema and COPD, can lead to liver failure in newborns and kids, and can cause cirrhosis of the liver in adults. Most people with Alpha-1 in the US don't even know they've inherited it, yet identification requires only a simple blood test. It is much more common than other hereditary conditions, such as Cystic Fibrosis, yet most people have never even heard of it. My day job is raising Alpha-1 awareness and increasing detection and treatment of people with Alpha-1 as director of Alpha-1 Advocacy at Centric Health Resources.
So how do I plan to help raise some money for the Alpha-1 Foundation? I'm going to participate in the 1st annual "Alpha-1 5k Walk Miami” Nov. 8 at Crandon Park in Key Biscayne. As a member of Team Alpha-1, I'll be racewalking in November…with two artificial hips and a double lung transplant caused by Alpha-1!!! So donate to a great cause and help find a cure for Alpha-1. Or, join me by signing up with Team Alpha-1 and coming to the 5K yourself!
About Team Alpha-1:
As Mary Pierce, Team Captain, explains, “Team Alpha-1 is a state of mind. Its mission is to increase awareness, early detection, and get fit all at the same time. This not only gives individuals around the country a chance to pick teams and organize but as a result they raise money for research!”
Team Alpha-1 is comprised of Alphas, family and friends who volunteer to participate or assist in local, national and international sporting events. Team Alpha-1 was created to promote awareness, detection and encourage participation of Alphas across the country to raise funds in support of Alpha-1 research or programs. For more information click Team Alpha-1.
About the Event:
The Alpha-1 Foundation will host its first annual “Alpha-1 5k Walk Miami” Nov. 8 at Crandon Park in Key Biscayne.
About 150 Alphas, friends and family, community leaders, and healthcare providers are expected to attend. The event starts at 8 am on a Sunday in a beautiful setting – in a month that usually features Florida’s best weather.
There will be a 5k walk (about three miles) and a family walk for those who would like to bring their children.
Not ready for a 5k walk?
It’s okay! Everyone is invited to walk any distance that’s comfortable for them. There will be a health fair with health-conscious foods and a juice bar.
Sarah Johnson, the mother of two Alphas, will be driving with her family down from Jacksonville to attend. “Alpha-1 is still a disorder that not enough people know about,” Johnson said. “The five-hour drive is nothing for us, and it is special to be around others fighting for a cure for Alpha-1.”
The Alpha-1 Foundation will also host a visitor’s day Saturday, Nov. 7, the day before the walk. Everyone is invited to visit us at the Alpha One offices in Coconut Grove.
After enjoying some hors d’oeuvres and visiting with us at the Foundation, visitors can attend a “Meet the Doc” session to hear about our current research projects. Early registration will be available for those who plan to participate in the walk the next day.
For more information, contact Angela McBride at 888-825-7421, Ext. 233 or amcbride@alphaone.org.
Many thanks for your support-- and don't forget to forward this to anyone who you think might want to donate too!
About Alpha-1:
Alpha-1 is the most common known risk factor for emphysema and COPD. Alpha-1 has been identified in virtually all populations and ethnic groups. It is estimated that about 1 in every 2,500 Americans have Alpha-1 and yet less than 10% have been diagnosed. Alpha-1 can lead to severe lung destruction and is often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD). Alpha-1 can’t be diagnosed by symptoms or by a medical examination; you need to get a simple blood test to know for sure.
Your generous donation of $25, $50, $100 or more will aid in the detection and treatment of this devastating genetic disorder. Ultimately, with your help we will find a cure for Alpha-1.
About Len Geiger:
Len Geiger was diagnosed as Alpha-1 (Alpha-1 antitrypsin deficiency) lung affected in 1994 and has been involved in the Alpha-1 community ever since.
He received a life-saving double lung transplant at the University of Virginia in 2002. Since then, Len has been featured in Runner’s World magazine and Sports Illustrated as well as a number of other newspaper articles and publications.
Having been a guest or subject of documentaries on CNN, the Today Show, the Discovery Health Channel, HBO’s “Real Sports with Bryant Gumbal”, and most recently ABC's "World News Tonight with Charles Gibson", Len continues to raise awareness for Alpha-1 and the importance of early detection.
As Director of Alpha-1 Patient Advocacy for Centric Health Resources, the distributor of Prolastin, Len maintains his commitment to raising awareness of Alpha-1 and serves as a resource for medical professionals, newly diagnosed patients and their families.
Len lives in Jacksonville, FL with his wife, Christina, and daughter, Ava Corinne.
Videos:
Mystery Diagnosis - Alpha-1 (part 1 of 2)
Mystery Diagnosis - Alpha-1 (2 of 2)
HBO Real Sports - Diagnosis of Alpha-1
HBO Real Sports - Lung Transplant Success!
ABC World News - Breath of Life
Articles:
Sports Illustrated column by Rick Reilly
Times-Union column by Mark Woods
Greenville News article by Mike Foley
YourLungHealth.Org