Monday, July 15, 2013

Cure CMD at the NIH

After having just spent two days at the National Institutes of Health for the Cure CMD conference, all I can say is ... Wow!  You can't help but be in awe as you walk around the campus of the NIH.  The place emanates brilliance (and security).  One of those brilliant minds is Dr. Carsten Bonnemann. Dr. Bonnemann works closely with Dr. Anne Rutkowski (Co-Founder of Cure CMD) and he is instrumental in helping Cure CMD carry out its mission.  Notwithstanding his brilliance, Dr. Bonnemann is humble, he is kind and and he is approachable.  He spent the first evening of the conference hanging out with families, answering questions and even looking at an MRI scans brought by a family who traveled from South America to attend the Conference!

My intent in attending the conference was to meet several CMD families who I've only known via email and Facebook.  I wasn't disappointed.  It was such a great experience to not only meet the families I'd connected with online, but to also meet other CMD families, as well as physicians from several top Children's Hospitals across the country, physicians/researchers from Europe, and the geneticists/researchers who work with Dr. Bonnemann at the NIH.  The brilliance factor was off the charts! It was a privilege to participate in such an awesome conference held at such a remarkable venue.  

A few pictures of the NIH campus:  

Lobby of the main clinical building

elevator doors

I loved this quote on the wall of the auditorium named after its author:

Hospitals with long 
traditions of excellence have 
demonstrated abundantly that 
research enhances the vitality of teaching; 
teaching lifts the standards of service; and
service opens new avenues of investigation


Short Jack update:

Jack has his repeat CT scan next week. I had to move it up because the last few weeks he has been experiencing pain and is not tolerating sitting in his wheelchair.  His urine output is also down, which has me concerned that the stone may be blocking things.  I'm not looking forward to where this might be heading.  I'll update after the CT once I know more. 



Mary MacDonald Flanagan said...

It was a pleasure to meet you and I look forward to reading your blog regularly. I am so glad I had the opportunity to attend the conference with Trish. I learned so much which will make me a better nurse and a better friend to Trish and Danny.

Mary Flanagan

Susan said...

That sounds like a great trip. I'm glad you were able to participate. I sounds like it lifted your spirits. I REALLLY hope that Jack isn't headed for more stones and surgery! Steve and I were just talking about his kidney stone experience when he was in his 20's. We both thought he was dying. Talking about Jack, Steve just shook his head and said "Poor kid." I had hoped that they wouldn't return. XOXO.