A Message to our Family & Friends...

(We've updated these pages as of 5/26/10.)

ATS Conference in New Orleans!

The ATS Conference wanted a patient speaker to talk for 5 minutes about their experience with Pulmonary Rehabilitation. My husband saw the request, noticed the conference was held in New Orleans, and pretty much volunteered me to do it (as obviously, it isn't something I would normally volunteer for on my own). In his defense he did ask first, but I didn't think they'd pick me and halfheartedly said sure. Well, imagine my surprise when I found out I was going to New Orleans to give a speech. YIPES! Then, when they were going over everything, the coordinator thought I would also fit in well for a longer 15 minute speech on having an acute lung injury and how it affects you and your family's lives. Well what do they say? In for a dime - in for a dollar, I figured if I'm going there anyway... why not? And if it would help bring more attention to LAM in front of researchers who actually might be able to treat or cure the disease, then I couldn't very well argue against it.

The 5 minute speech was the first one, and I could get through that one without a problem. It was just a little bit on my experience with Pulmonary Rehab, which was mainly a positive experience, and it really did help me learn how I can best exercise with LAM and my unique needs.

The longer 15 minute speech was next, and I never could get through the entire speech without becoming emotional. I was hoping with some practice I could get acclimated to it and get past that -- but apparently not! Anytime I talk about my kids and how this affects them and our family, I cry. (* sigh *) So I just had my kleenex up there with me, and I somehow got through the entire thing. Kenny said I did all right, but I think he's biased. :-)

We sat though a lot of doctor's presentations waiting to give my speeches. While just about all of it was WAY over our heads, the basic idea was that they are working on repairing lungs at the cellular level. Looking around the room during their presentations complete with powerpoint slides, there were many doctors and researchers nodding their heads and taking lots of notes.

We had several other days in New Orleans just to ourselves, and we had a lot of fun. We posted some pictures on our family blog on May 26, 2010 if you'd like to see them.

 

THANKS - 2nd Annual Breath of Hope LAM Charity Benefit!

Thanks for your caring and understanding in regards to Danielle's recent diagnosis.  We appreciate the offers for help and the prayers that  

Please check out the links on the right - they describe our journey, what LAM is, as well as our hope for the future. We continue to ask for any prayers and hope for a treatment or cure -- both of which do not currently exist.

We'd also like to thank all our friends and family for either attending or contributing to the fundraiser for LAM in Chicago: the 2nd Annual Breath of Hope LAM Charity Benefit. It was on Saturday, November 7, 2009. Kenny and I were there along with some great friends! The benefit was able to raise $56,000 (net) for the LAM Foundation, which was even over their goal of $50,000. How unbelievable is that! Thanks again to EVERYONE for their support.

Love,
The Benich Family

INFORMATION

QUICK CONTACT

Email: info @ benich.com