Originally posted July 8, 2015
ZTA is forever
Back in the 90s when I was a collegiate ZTA, there was a line in one of our rush skits that said “When we say ZTA is forever, we mean ZTA is forever.” It was a fun skit and that was a great line… but I had no idea just how much those words would be repeated and, quite frankly, needed in my life…
When I was in college (West Chester University, PA) in 1990, I actually had no intention to “go Greek” as we said. I was an athlete and figured I would spend my free time at college like I did in all my years prior: on the soccer field… and then I met Zeta Tau Alphas. My sophomore year roommate, Staci (Foerst) Callahan and I seemed to meet ZTAs everywhere: across the hall in our dorm, in classes, and interestingly enough, I even met a ZTA on the soccer field! Staci and I joined ZTA (Eta Gamma) and quickly formed friendships that would literally last a lifetime. Susan Eckert, the ZTA I met on the soccer field, was not just my teammate on the field, she would become my “Big Sister”… and later she and I would become part of a team we would never see coming. It was fun to pledge ZTA with my roommate buddy Staci. It was wonderful go through “Big and Little” activities with my soccer buddy Susan. But later my life would take a turn that would have me thanking God for my ZTA sisterhood daily.
“To realize that within our grasp, in Zeta Tau Alpha, lies the opportunity to learn those things which will ever enrich and ennoble our lives;”
Time in college with ZTA was definitely wonderful, fun, and busy. Oh so busy. I am one of those to dive right in, so no one had to twist my arm to get involved in every activity and eventually take on leadership roles. “You get more out of the sorority than you put in” rolled off so many sisters’ tongues, but I didn’t need motivation to be active. “You learn time management skills in ZTA life” was never more true as I learned pretty quickly that keeping ZTA activities, studies, and a busy soccer schedule balanced was a challenge (and not one I conquered right away!)
Leadership skills that last a lifetime
As tuition prices climbed, I would end up having to get a job during my junior year. I was studying to be a teacher, and junior year adds many more classes that had big time commitments. There were only so many hours in the day so I had to make a choice: invest my time in soccer, a sport I had played and lived for since I was 8 years old; or grow with ZTA. It was a grueling choice, but I hung up my cleats and chose ZTA. I got involved in leadership roles and by my senior year, circumstances that I can only see as Divine Intervention, would give me the opportunity to become Chapter President. I remember our Traveling Leadership Consultant talking with me about the Presidency and her words “you will learn leadership skills that will last a lifetime” now ring in my head daily: she was exactly right.
Fast forward and there was graduation, moving away from my hometown, the list goes on. Life gets busy when you have to grow up and be an adult, so I didn’t get to talk to my sisters as often as college days. Through lots of life’s journeys, my ZTA sisters were always a phone call or email away. They stood by me at my wedding (I met my husband through a ZTA sister!). They flew to Chicago to see my first born child. All great times, all good stuff. But the true testament of sisterhood, the truest display of love, friendship, and commitment to our crown and each other, came when life dealt me a blow that would take years to regain my balance: my first baby was diagnosed as blind.
I will never forget the day the doctor told me my 4 month old perfect son was blind. He was “so blind” that he would need to learn Braille and he would walk with a white cane. No driving. No baseball. No soccer in his future. He had something I had never heard of, Lebers Congenital Amaurosis, which is actually the most severe form of Retinitis Pigmentosa. He had hardly any vision if any at all, and whatever he did have would be gone by his teenage years. I had never heard of LCA because it is a rare disease, so rare that it only affects about 3000 children in this country. No treatment. No cure. No hope.
After returning home to Chicago from visits to all of the experts we saw to confirm our nightmare, I reached out to Susan and Staci through email to let them know the news. I couldn’t talk yet, I told them – I couldn’t stop crying enough to have a phone conversation. I assured them I would call soon, but needed some time to process. Staci emailed right back with her unwavering love and support, and Susan called me almost immediately after I hit “send”. I answered and actually laughed for the first time in a while when I said “Sheesh, did you read the whole email? I said I can’t talk yet.” We always have silly things we say when we first see each other, you know, the goofy “inside jokes” that only she and I get. But this time, Susan’s voice was so serious I was nervous. “Listen to me,’ she said sternly, “My niece was just diagnosed with the exact same thing.”
I was stunned. There are only 3000 children in the US with LCA, and Susan is directly connected to two of them? Speechless. It gets better: There are approximately 19 known genes causing LCA. Each gene is its own rare disease as each gene causes certain, specific forms of LCA. In 2009, after my family’s second attempt at genetic testing, we found out Susan’s niece and my son had the exact same genetic defect causing their LCA. They are both LCA-CRB1. There are approximately 300 children in this country with LCA-CRB1 and my ZTA sister, my “Big”, is directly connected to two of them. Wow.
“to be true to ourselves, and to those within and without our circle; to think in terms of all mankind and our service in the world;”
Out of darkness… and into greatness
Jump ahead a few years to now: My husband and I are back in our hometown of Bucks County, PA and we have three children – two of them, both of our sons, are blind from LCA-CRB1. My ZTA sisterhood couldn’t be more beneficial to my life, and all the promises during collegiate days couldn’t be more true, and strong, and… noble. The leadership skills I gained in ZTA sure did last a lifetime: in 2011 I found other families with LCA-CRB1 children and started a worldwide organization to fund research for a cure for LCA-CRB1 and support the affected families living with the challenges of blindness. Our organization, the Curing Retinal Blindness Foundation, is currently funding research teams all over the world – and we now have treatments and cures within reach. The biggest fundraiser for our organization is one that my children started. Bike the Basin, a youth cycling event, is closing in on raising a half million dollars for CRBF. This event draws 200 youth volunteers annually and Staci is the volunteer coordinator, managing all 200 of them! Another one of the biggest events for CRBF is our Fore Sight Classic Golf outing, and Susan works with my husband to coordinate sponsors, golfers, etc. At both events, these ZTA sisters stand with me, helping me achieve goals no one thought possible… and the best part is that they keep me laughing, like ZTA sisters can do. I am so proud of the work they do for CRB1 kiddos, and I know they are so proud of me too.
ZTA connections to my journey are constant. Through a good friend, I was recently connected to a magnificent production company, ShadowBox Pictures, who volunteered to create our latest CRBF awareness video. As it turns out, the family that owns the company has three children too… and one of their daughters just became a ZTA (Eta Lamda). Watch the short but powerful video, “Driving the Research”, below or click here. (Mia, the ZTA, is actually in the video, she hands my son, Michael, his cane. I’m the goofy Mom in the backseat!))
In my journey with ZTA I can say many, many great things, but the greatest is that my ZTA sisters always uphold my favorite part of our creed: Remembering always that the foundation precept of Zeta Tau Alpha was Love, “the greatest of all things.”
WANT TO HELP? If your chapter would like to get involved in the mission of the Curing Retinal Blindness Foundation, send an email to me at email@example.com
NOTE: Staci (Foerst) Callahan is currently Ritual Advisor Lamda Zeta (Lehigh Univ) and Membership for Philadelphia Alum Chapter (former Chapter President). She is a Former National Officer – District President for IIA and a Certificate of Merit and Honor Ring Recipient Kristin (Schneider) Smedley is a member of the Philadelphia Alum Chapter.