27th Annual NMF Conference

Portland, Oregon

July 15-17, 2011 

NMF Teens Goofing Around at the Conference

Dear Friends,

On July 15, I arrived in Portland, OR for my first ever Marfan conference. Along with CMA Director Jo Paska, we were greeted at the hotel with several members of the teen community. Their faces revealed excitement and warmth. The lobby was filled with Marfan teens ready to kick off the conference with a celebration.

Jo and I attended an NMF Directors and Leadership welcome reception where we met several members of the NMF Board of Directors and volunteers who shared their backgrounds and how they became involved with the NMF. Then moving to the general welcome reception, with over 400 people in the room, we truly felt the excitement and exhilaration amongst the entire group. It was truly amazing to speak to all the families and hear their courageous stories about the battles they have overcome. I was truly inspired by the strength and optimism by all individuals who came together to support one another.

The second day started with speaker presentations and panel questions which provided information for newly diagnosed individuals and also advancements for those already versed with their (or their family members’) disorder. Dr. Ronald Lacro provided an updated on the very promising NIH Losartan Research and also similar international research trials underway. Presenters addressed important issues all patients should be familiar with, not only once diagnosed, but monitored continuously. We later broke out to workshops; I attended three: Loeys-Dietz Syndrome, Eating to Reduce Pain and Increase Energy, and Becoming a Volunteer/Fundraising for the NMF. I was able to learn and gain perspective on the types of questions and concerns that affect the Marfan community. It was inspiring and relieving for patients and parents to see the similar types of problems others in similar situations are faced with; they bonded within these sessions and became pillars of support for one another.

It was truly amazing to see everyone come together and all share the same passion to increase awareness of Marfan Syndrome, related disorders, and aortic aneurysms and dissections. A very special thank you to Dr. Lynn Sakai, Portland Shriner’s Hospital for Children, and Oregon Health & Science University, for all your hard work and hosting an incredible conference. Also thank you to the NMF for welcoming us to Portland for an unforgettable experience.

We are now just a month away from the CMA’s 2011 Halifax Conference and we hope to reach out to our entire community to come and share a special experience marking the Association’s 25 year anniversary. This year’s conference has been sponsored by the Canadian Institutes for Health Research (CIHR) and will include small group workshops with world leading experts in the field of Marfan and related disorders. Come with your questions, show your support, make life-long friends, and be a part of our growing and strong community! I hope to see you all there!

Best wishes,

Sharmin Jamal

Project Manager & Fundraising