Wednesday, June 13, 2012


The Inaugural World RTS Day is July 3, 2012.  Let's take this opportunity to raise positive awareness for Rubinstein Taybi Syndrome.  We may be a small community on a World scale but we're mighty enough to let the whole world know that we're here and we're ready to be counted.  Families from all over the world are committed to World RTS Day. 

In this, our Inaugural year we ask that everyone who can, contact their local Newspaper , Radio Station or TV Station and see if they can get a story on their own story of RTS and our World RTS Day. This would be a great starting point . Also if anyone has an idea how to raise awareness, please share it with the World RTS Day organizers.
Don’t forget to send copies or links of your stories so they can be posted on the World RTS Day Website.

With Love

Friday, April 20, 2012

Puerto Rico -- San Jorge Children's Foundation Visit

MWI 2011 Heidi Scheer and Ms. Puerto Rico MWI Evelyn Bonilla visited the San Jorge Children's Foundation on April 3rd as part of their visit to Puerto Rico

Tuesday, April 17, 2012

Working with Theo Schear

I've really enjoyed my time with Theo -- he is a force to be reckoned with and someone to be watched -- I expect much more from him.

Here's the last installment of images he took over the last few weeks.

You can see all the pics on Facebook or my board at Pinterest

Saturday, March 24, 2012

More with Theo Schear

Having a lot of fun with Theo ... and getting a chance to see what life looks like from the outside looking in.

Coaching the next generation of Title Holders...

My Superman every day...


Very excited about this!  Announcing that our host country for the very MWI  Pageant has crowned a Queen.  Introducing Evelyn Bonilla Puerto Rico MWl 2012!

Sunday, March 18, 2012

More than a few days in the life of....

Stephanie was recently asked to participate in Theo Schear’s current project. This is what he told us:

“We've all seen enough of the Little Ms. Sunshines and the glitter-faced girls with tiny tiaras and makeup, but what happens when beauty pageants grow up? Who are these smiling swimsuit model women that represent our states and countries? Pageants are a staple of American culture, but exist outside of popular media. Through Stephanie we can find the truth about the form and function of American beauty pageants.”

Theo will be shadowing Stephanie over the next 4 weeks documenting her life inside and outside the pageant world. Images and details from their journey together will be shared here.

Township work Pittsfield

A special St. Patrick's Day celebration of mother Mary's Birthday

Theo Schear is a photographer and filmmaker from Oakland, CA, studying at the University of Michigan. He is the winner of the Fair Trade USA Fair Trade Fits video contest. You may visit Theo HERE

Tuesday, February 28, 2012


The Rare Disease Awareness Day Petition is still ongoing.  I started it a few years ago when the United States was first getting on board with this very important cause ... and get on board they did with many States, Counties, and Cities proclaiming this day as Rare Disease Awareness Day. It's usually the 28th but this is a Leap Year!  Please take the time to sign the petition by following this PETITION LINK.

Love Stephanie