Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, September 25, 2007

Congenital Diaphragmatic Hernia Awareness Day TM is Announced

We have informed our members that Congenital Diaphragmatic Hernia Awareness Day has been launched. So far we have heard back from Mississippi and they signed the Proclamation and returned it! Iowa has contacted the Director who mailed it in and willing to sign it for the whole MONTH! We just heard from Pennsylvania too. Virginia will be sending it out in January.

A letter and a sample Proclamation and a forty-one cent stamp and we are working on cities and towns too! We have had a total of 15 so far send in these to their state, Commonwealth or Republic.

We are spreading awareness....

Tuesday, September 18, 2007

A Tribute to One of My Heros

I want to work for a company that contributes to and is part of the community. I want something not just to invest in. I want something to believe in. --Anita Roddick,8816,1660911,00.html

It seems like a lifetime ago - before Cecilia and before I had heard of the birth defect Congenital Diaphragmatic Hernia - I studied Anita Roddick and her business. I even wrote a speech I had to give in a Business Public Speaking Course I took in College on her. (When I went back to get my degree.) I admired this woman so much for taking a stand and trying to make a difference in this world.

A few months ago, I found her blog and had lost touch with what Ms. Roddick had been doing and learned that she was fighting illness, had sold her company and was still being the activist she always had been through her life. I want to live like that and also die like that!

Of course, my mother, my grandmother and my sister and my daughters are my heros in my life but I also can include Anita Roddick in that category also.

I recall that stock of her company fell a bit and the accountants were informing her of this "great loss". Her reply to them was something like this: "All on paper, we didn't really loose any money because we didn't have it in the first place."

If more CEOs would view it that way!

Saturday, September 15, 2007

Seize this Life

Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is. --Mary Ann Radmacher

Seize this life - no matter what it gives you - you can take the bad and turn it around. Someone recently said I am such an advocate for the CDH babies born - I hope so - not just those that go to heaven like my daughter - but those that grow and thrive in this world too.

Working for Breath of Hope and the members is what I love to do, my children and family are also what I love but in many ways - BoH has become a family.