MARFAN RELATED RESULTS:
* Pulmonary and Sleep Apnia test show - mild retrictive lung disease and partial upper airway restriction.

* Eye Test - no major lens or retina problems at present but should be monitored.

JON'S CURRENT STATUS AS OF December 2007

* MRI on lower back -- dural and tarlov cysts found

* Have been seen by a cardiologist with Marfans experience.

* Have been seen by a rheumatologist with knowledge of Marfans. Diagnosed with Fibromyalgia.

* Awarded Social Security Disability.

* Upper GI with small bowel follow thru - found bacterial overgrowth in small bowel which was treated with anti-botics and improved gastric symptoms.
- Kidney Stones
- Tarlov Cysts
- Dural E Cysts

Current status consists of 2 new problems.

-Increased Arythmia -2 ER stays in 2007 and early 2008

- Stomach problems elevated - put on Protonix - status to early to tell

Ongoing:

-Cellulitis - two hospital stays in 2006

-Increased pain in bones and joints

-Trouble swallwing (when eating)

*GOALS FOR 2008 and Beyond

1. Work to have Marfan Syndrome listed in its entirety in the Disability Evaluation Under Social Security Guidelines as a "Multi-System Disorder".

2. Improving hospital awareness (around the country and world) about Marfan Syndrome. (as of 12/07 - 3,400 + hospitals contacted)

3. Promote our MARFAN CLINICS at both CHILDRENS and BRIGHAM and WOMENS HOSPITALS IN BOSTON

4. Continue raising awareness of Marfans in the medical community with our Physician Awareness Committee.