Community

Instant love, encouragement, and hope...this embodies the PWS community.  

David and I knew early on, that we wanted to reach out and connect with other families on our same journey.  We wanted to make sure that we remained positive, yet realistic.  We yearned to connect with families experiencing our same joys, struggles, challenges and heartache.  

We began by reaching out to our special needs community in Spartanburg called Family Connections.  I was paired with a Support Parent who was so sweet and helpful.  Then through Greenwood Genetics Center, we were connected with local family in the area who had an older child with PWS.  They are our angel family...this sweet momma spent many hours talking with me on the phone, they drove to our house to meet us and love on our Ellie. and they cheered us on as we began our journey with PWS.  David and I were so nervous as we prepared to meet them for the first time...it was simply amazing, encouraging, and exactly what we needed at that moment.

We dove into the PWS community from that point forward, and have never looked back.  We hosted our first One SMALL Step walk for PWS Research when Ellie was 10 months old...250 people came to support us, and we raised $23,000 for research!  We couldn't have prepared ourselves for the feeling of that day...it gives me goosebumps thinking about the 10 PWS families in attendance, one heard about the event on the news and came out!  

A week after our walk, we traveled as a family to Philly for The Foundation for Prader-Willi Research conference to experience more community. Every person there instantly became part of our family, and we knew we were understood and supported.  It was an indescribable feeling.  After returning home from the conference, I remember finally feeling at peace with PWS.  And hands down, I was energized to fight even harder to raise PWS awareness and funds for research, to support, Ellie, and all individuals battling PWS.

Our second One SMALL Step walk in 2014 was another huge success, and we "Exercised for Ellie and others fighting PWS" 80s style!  300 people came to support us, along with 12 PWS families.  We raised roughly $25,000 for PWS Research!

Most recently, I have become the Vice President for the Prader-Willi Syndrome Association of the Carolina's chapter (North and South Carolina) and I couldn't be more excited to help get the chapter re-energized, and moving and grooving to support one another and our children.  We have our first annual, mini conference in Huntersville in June, and yet again, it is a chance for me to witness and experience the amazing PWS community.

Our PWS community an inspiring group of individuals, and year after year we continue to be amazed at what we are able to achieve.  While, we all never dreamed of being on this same journey together, David and I are beyond blessed to be navigating it with the best community of individuals we could have imagined.  Together, we will help our children and loved ones with PWS, Live...Life...FULL.