Who we are: BWCFI
The Beckwith-Wiedemann Children's Foundation Int'l (BWCFI) was created as a resource to help families globally. We are a non-profit 501(c)(3) foundation dedicated to helping families find local BWS resources, physicians and hospitals as well as providing current BWS information.
BWCFI Directors
Kristen Burr
My name is Kristen Burr and I am the only Director of the BWCFI that doesn't have a direct association with a BWS child. However, I do consider that I have 800+ children to call mine.
My journey with BWS started in 2003 with Dr. Jeffrey Marsh who ultimately performed more than 600 tongue reductions in his career. Upon his retirement in 2014 I transferred to Dr. Chad Perlyn to continue the legacy.
What many don't realize is that I have a child with a syndrome which makes me no stranger to the emotional rollercoaster BWS families go through. I have the same struggles with physicians, the same worries and frustrations and the same resume of specialists. My Olivia drives me to serve people at a higher level and to look at life through a different lens.
My own experiences have also taught me to support families and meet them right where they are in their journey and try to make it easier. While I come to the table with a lot of personal knowledge that comes from raising a "special" child and working with medical professionals, I am also striving to make a difference with changing knowledge and education in the Beckwith-Wiedemann community. My passion is to continue helping others while also making a lasting impact on the BWS world.
maegan tipp
My name is Maegan Tipp and I live in Lake Jackson, Texas with my husband Nick and our three girls. Our middle daughter Kaysen was born at 33 weeks with an enlarged tongue, hemihypertrophy, and low blood sugar. While in the NICU, she was genetically tested and a few weeks later was diagnosed with BWS.
Kaysen had a tongue reduction at six months old, and also wore a shoe lift until she was seven years old. It was then she went in to have leg lengthening surgery to fix the discrepancy. Kaysen is now nine years old and is living life to the fullest! She is going on her seventh year of dance, and this year has decided she wants to play soccer. She is energetic, caring, and loves with her whole heart!
I wanted to be a part of the BWCFI to help other families. Without this foundation, I wouldn't have had the knowledge, guidance, and resources that I needed to advocate for my child. The BWS community has been such a great support system through our journey, and I am blessed to be a part of it.
Alaina Brockway
My name is Alaina Brockway and I live in Commerce, Tx with my husband and three children, Jamie, Brooke, and Evan. Our youngest son, Evan, was born with an omphalocele, hypoglycemia, enlarged organs, hemihypertrophy, ear pits, nevus flammeus, and macrosomia. He was diagnosed with BWS at birth and confirmed through genetic testing 2 weeks later. He didn't have an overly enlarged tongue but ended up having a tongue reduction at 2 years old due to sleep apnea and swallowing difficulties (aspiration and penetration). He wears a shoe lift for his full, left side hemihypertrophy, but it hasn't slowed him down any. Evan is very active, loves to play sports, and has no trouble keeping up with his older siblings.
Through our BWS journey we have connected with so many wonderful families who have been instrumental in helping us through the hard times and cheering us on in the good times as well. The BWS community is so special because it is full of incredibly strong, caring, compassionate, and selfless people who are truly there to bear one another's burdens, and to offer support and encouragement through even the most difficult times. It is an honor and privilege to be a part of this incredible community.
SPECIAL THANKS
The Beckwith-Wiedemann Children’s Foundation International honors and thanks Anita Ament, affectionately known as “Grandma Anita”, for her many years of dedicated and selfless service to the foundation and families impacted by Beckwith-Wiedemann Syndrome.