I Did The Thing That Scared Me

 Almost 2 weeks ago, I blogged and told you all to "Do The Things That Scare You".

Today, I did that.

Today, I spoke at 24 Hours of Rare and gave an hour long speech on "The Importance of Collaboration Among Charity Leaders to More Effectively Raise Awareness and Find Treatments"

It's always an honor to speak at this great event.   

So why was I scared?   Because I dared to speak on a subject that NO ONE will talk about publicly.  Oh everyone will talk about it privately in whispers and frustrated pointed fingers but no one will tackle the subject of charity competition.

Until today.

Have any of my experiences resonated with you?  Do you want to share your story too?  Are you tired of the behind the scenes nonsense and bottlenecking of research?   Or do you just want to share that you've not experienced any of this negativity (yay!)?

Please take the Collaborate For Rare Lives Survey.

https://www.rareadvocacymovement.com/patient-advocacy-community-dynamics 

Please, please be brave and do the things that scare you too so we can save more patients.   They need leaders who will stand up and speak out and put them first.

You can even take it anonymously.   

We can do this.

National Book Day

 This week, our SEVENTH book was published at the charity!!!

I personally have either written, edited or organized every one.  Tons of work but work it.  All on our web site for sale or Amazon.

1. The NEW 25th Anniversary CDH Yearbook

2. Stories of (CDH Patients) Cherubs Vol. I

3. Stories Vol. II

4. CDH Baby Book

5. Cooking With Cherubs Vol. I

6. Cooking With Cherubs Vol. II

7.  Dear Nicholas Sparks

We stalk the writer in that last one, but whatever.  We will eventually wear him down.

Birth Defects Awareness Day

 Today is global Birth Defects Awareness Day.

That means I'm going to raise some awareness of Congenital Diaphragmatic Hernia:

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when a baby’s diaphragm (a thin sheet of muscle that separates the abdomen from the chest) fails to fully form, allowing abdominal organs to enter the chest cavity and prevent lung growth.

CDH occurs in approximately 1 in 2500 births, with over 1600 babies diagnosed each year in the United States alone. There is currently no known cause, but studies have suggested that it is likely due to a number of genetic and environmental factors.

Click here to learn more