Friday, August 27, 2010


Grilling for Charity! It was hotter than hot in Ann Arbor on August 10th at the Mongolian BBQ Fundraising event for the National Association of Music Education. MENC is the National Platform of Mrs. America and truly a great cause with its continued efforts to bring…and keep music education in our schools.

I have a new found appreciation for the cooks working that giant grill. It’s really a workout in disguise!! They are constantly in motion and the heat is intense. I think I lost five pounds that night…. LOL not a bad thing when you have a swimsuit competition at Mrs. America coming up!.

I'd like to thank everyone who came out to support us in our efforts to raise funds for MENC and a special thank you to Annette Kelly, Mrs. Oakland County for joining me.

Sunday, August 22, 2010


The Link we share...

Speaking at the RTS Conference in Covington, Kentucky in July was an enlightening and inspirational event. Even though I know from first hand experience that there are other families out there that share the same experience as we do with Donnie, it was wonderful to meet and talk with parents from all over – even some from other countries – as over 100 families participated. I remember what it was like the first time I made real contact with other parents of an RTS child; the sense of relief, of recognition…that there was someone else who knew what was going on inside me; inside the four walls we called home and had experienced the same hurdles and highpoints that we had experienced. Sharing my own story and getting to know them …especially the Moms… was very moving for me. It gave me that feeling deep inside that tells me that what we are all attempting to do in raising awareness and fighting for research opportunities and commitments is the right thing to do. Donnie had a great time meeting new brothers and sisters. He especially enjoyed dining at the revolving restaurant atop the hotel.

Everyone was so kind to us. The room almost vibrated with emotion and as I stood at the podium during my address I could feel the warm waves of love and support flowing my way. I hope that I was able to convey that I will never give up trying…for every family and child that needs me to keep spreading the word. There were plenty of tears, some of frustration and heartfelt pain but more so, tears of joy, laughter and the enjoyment and wonder of new found connections.

I really enjoyed the insight shared by Pediatric Geneticist Dr. Raoul C. M. Hennekam and I plan to attend the upcoming World Conference in the Netherlands.

The Mom Mixer was a great (aren’t they always) as we got to talk and laugh and just enjoy one another. Of course that entailed little stories and anecdotes about our children…which is the strongest link that we share.

Running for Research

We've received some great news!!  The Detroit Marathon will be taking place in October and Donnie's teacher, Amelia Polkowski Barrons, and her sister Anna will be running to raise money for The National Organization for Rare Disorders, specifically for Rubenstein Taybi research in honor of Donnie!  Here's the link to help these very generous women!  NORD, Donnie, Jordan, Mom, Donald and myself thank them...and you for getting involved and helping with a very worthy cause.