Archive for category: Frontpage Article

The Mowat-Wilson Syndrome Foundation was the grand winner on Food Network’s Chopped on its Grand Holiday episode aired on December 5th, 2017. Chef Adam Greenberg, a three-time winner on Chopped, won the battle over three other undefeated competitors. What a great show! Adam chose the MWS Foundation to receive the $10,000 grand prize.

Adam’s sister, Katie Fineberg, is a director of the MWS Foundation and mother of Zoe.

“Zoe is very special to me. She is one of four nieces and a nephew on this side of my family. Although Zoe has Mowat-Wilson Syndrome, she and I have a strong connection. I am inspired by her ability to love, laugh, and express how she feels with me. I’ve always spoken to Zoe as if she is just like everyone else I speak to, and she always knows how to get what she wants. As a family, we all wanted to learn about Zoe and understand what was ahead, and I think what we’ve all gotten back in return is far more valuable than anything we could have imagined. She is pure love.”

We want to congratulate Chef Adam for winning such an amazing challenge and thank him for choosing the MWS Foundation.

If you are in the Washington DC area, don’t miss Chef Adam’s Coconut Club located at 540 Penn St., NE Washington DC 20002 opening in the Summer 2018.

With the approach of Rare Disease Day on February 28th, Al Triunfo, a member of the MWS Foundation Board of Directors, began contacting local news organizations in the Atlanta area in early January. He wanted to see if any of them were planning to run a story related to Rare Disease Day. After numerous emails and phone calls which seemed to go nowhere, Al was finally able to generate interest from the health team at Fox5 Atlanta to run a story about his 7 year old grandson, Logan, who was diagnosed with MWS at 10 months of age. The hope was that Logan’s story would help increase awareness about rare disease in general and specifically about MWS. The Fox5 team filmed footage of Logan and his parents, Jackie and Olin Arnold, at their home in Marietta, Georgia. They also interviewed Dr. Jose Garza, Logan’s pediatric gastroenterologist at Children’s Healthcare of Atlanta. The end result was a news story that highlighted the emotions and challenges that families face when they know something is wrong but don’t have any answers. It was also a message of hope. Hope because answers can be found and with a diagnosis, there is a huge MWS community ready to share their love and support.

Fox5 Atlanta aired the story on February 27, March 1 and March 4, and it was quickly picked up by several other Fox stations around the country. The story also spread on Facebook and websites like LittleThings, VonVon, Simple Reminders, and Adalia Rose. Additionally, a handful of celebrities, including Real Housewives of the OC, Tamra Judge, shared it on their personal Facebook pages. The video has over 50K views in its full and shortened versions. The awareness is already impacting our MWS community tremendously. There have been 5 situations of families seeing the story and contacting us with hopes of a potential diagnosis that was previously unrecognized by themselves or physicians.

The Foundation wants to thank the Medical Team at Fox5 Atlanta, Dr. Garza and of course, the Arnold family. We are so proud of Jackie and Olin for their willingness to share their personal story so that others might find answers and support.