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Learn about our passionate team, and how you can help our 5k run/walk nonprofit charity
L-R Jackie English, Tonya Henry, Deb Burwell and Kathy Carter
In 2010 Deb Burwell and I were both diagnosed with Alpha 1 Antitrypsin Deficiency. We were both a little lost, thinking that we were the only ones in our local area with Alpha 1. We both knew that we wanted to join and/ or start a support group but just sat on the idea because we didn’t think there was anyone else like us around. Fast forward to April 2011.........we found out about each other through a mutual friend. We met for the first time on April 21, 2011 ( and had our first support group meeting with just the 2 of us ) We talked for a long time and mentioned that we both wanted to start a support group . We got together about once a week and then got to go to our first National Alpha 1 Conference in June of that year. We met a great couple Todd and Mary Pierce along with many other Alphas. We discussed with Mary and Todd that we wanted to become Support Group Leaders and they sent us in the right direction. We had our first Support Group Training at that conference. In the meantime, as soon as we got back from our first conference, we got ready for our 1st Annual Volley For Alpha 1. My daughter , Danyelle knew we needed to spread awareness and raise money for a cure so that is how it got started. This was the first of 5 years that we had this event. Each year we gave to a alpha organization or an alpha patient in need. We did all of our training and then were finally ready to have our first meeting on June 16th, 2012. We were both so excited that we were doing what we loved, Spreading awareness and supporting others with Alpha 1. We have been going strong ever since. In 2016 we turned the Volleyball tournament into a 5K run/walk for our 1st Annual Run For Alpha 1. Shortly after that, with months of hard work, we officially became the non profit Open Arms For Alpha 1. Deb and I had accomplished another goal of ours and we were so excited! In September of 2017 we had our 2nd Annual Run For Alpha 1 and was our very first event as an official , non-profit with the help of Kathy Carter and Tonya Henry coming on board to help form our group. We plan on continuing our dream with helping others and building a house for Alpha 1 patients. This house will be for Alphas who need the help with getting the care that they need, for recovery after a hospital stay or a place to live out their last days for comfort and care. In our journey through the years we have heard the stories of our alpha brothers and sisters who have no place to go if the need help with their everyday needs, therapy after a hospital stay to get back on their feet , or just a place to live out the rest of their lives with the love and care that they deserve after being a warrior with this dreadful disease. This is what has pushed us to do this, to help our brothers and sisters in need until they find a cure for Alpha 1 .This year will be our 5th Annual Run For Alpha 1 and our 10th year of raising awareness and funds for Alpha 1. Please continue to help us to make this house a reality.
We are a non profit organization here to educate, advocate, , raise awareness and help Alpha 1 patients and their families with emergency assistance.
Your support and contributions will enable us to meet our goals. Your generous donation will fund our mission.