FMDSA Conference

Fibromuscular Dysplasia
#1

Good morning everyone! I miss you all, what an incredible experience the conference was. I am so sorry that some of you were unable to make it. Just know we thought of each of you. Seeing so many of us together in one room, being able to share our experiences and learn more about FMD was so emotionally overwhelming to me. I feel so fortunate to have met each of you, Mimi is so right when she states these are Fine, Mighty, Dynamic Souls. I know we are all going to make an impact in this disease for us and future generations. It was also incredible to see the bond our significant others made with each other, there were bonds of friendships and support that were developed. We can’t forget how hard this disease can be on our loved one’s and I feel this conference brought them together. I am very grateful for the donations FMDSA received, as so many of you already know the patient registry is just around the corner and we want to continue our mission to
educate. We need everyone’s help, together we can make a difference. I would love to hear your thoughts and comments on the conference and suggestions for future conferences. Please feel free to email me at home: kaulrich@charter. net. My photos from the conference are on my web site if you would like to see them… please remember this is my personal family website…always a work in progress :slight_smile:

I just updated my website and thought you might want to check it out. To visit, just click on the links below or paste the URLs into your browser.

Site http://web.mac. com/mdulrich
FMDSA Photos
2008 FMDSA Conference

Kari

#2

CARING WITH COMPASSION is how I would discribe the conference. There was a Karma beyond discription amoung all individuals. Doug and I, two days later are still processing the emotional impact. Ocassionaly, I look at my left arm where the skin biopsy was taken, and I am amased that a part of me is in Belguim being analysed along with others biopsy’s to help define Fibromuscular Dysplasia.

The info shared amoung attendees, and presenters was incredible. All I can say ,it was great! Thanks to the hard work and efforts of the planners and organizers.

Anne

#3

Wow I wish that I could have gone! I couldn’t wait to hear from those who attended.Need more details !!So glad to hear that the conference was a great success.Well I did my small part and fianaly was able to get my two purple tubes of blood drawn and sent to study…finishing up paperwork and And I’m on Dr Naz’s list for 2009 study in Baltimore. Somehow I missed the call to get consented in to this years study.

#4

It was an amazing conferance. It truely was one of the most moving experience I have had in a long time. The Doctor’s who gave the talks were great and really care for us. I am motivated to look for ways to fundraise for the patient registry it is something that can give us the answers and help those that come after us.
I was moved by the many I met who are shining examples of people living with hope. Thanks so much for the many who put in the time and hard work to make this dream a reality.