Hi DJ,

This is really great news and very exciting!

Think of the possibilities! The Texas research spans many different diseases when you consider all that it encompasses with occlusive and aneurysmal cardiovascular and cerebrovascular disease and moyamoya.

I am in awe and amazement in that 2 defect genes have been identified that contribute to moyamoya and especially since moyamoya is considered a rare disease.  This is like winning the lottery! Remarkable!

Thank you for sharing this delightful and wonderful news and kudos to Dr. Scott Bourgeois and the Texas Medical Center research team. 

Hugs,

Lore

Hi!

We have also sent DNA materials from my deceased younger sister, Henriette from Oslo Norway (Europe). Her doctor sent this after DJ sent the e-mail regarding the research program. Hopefully her material helped them as well. Dr. Scott Bourgeois was interested as well, since her "case" ended with mortality. I'm not sure if he recieved the material, since I haven't heard from our doctor here in Oslo, as the summer holiday is going on for full here..

Thank you for a great forum!

~Caroline, Norway

Hi Renee,

My brother Kevin (Cubbie) has MM and he too has been contacted by the Texas research team and they are not only interested in our family history back to our grandparents which involves heart attacks and strokes but they are also interested in my kidney cancer as a possible link. So I too will be participating in the research.

Our mother had a heart attack at the age of 52 and had bypass surgery.  She lived to be 72.  Our older brother died at the age of 52 from multiple complications but initially had a heart attack. Our father died at the age of 51 as a result of melanoma cancer.  He had no heart problems that we are aware of.  However, his father, my paternal grandfather, had two heart attacks and two strokes.  He had his first heart attack at 52 and lived to be in his 70's. My paternal grandmother had angina problems and lived to be in her 80's and my maternal grandmother had heart trouble and my maternal granfather didn't have heart trouble but had hardening of the arteries and had a stroke.  He live to be 87. So yes, there is a history of heart attacks and strokes in our family and as you can imagine, I was very excited when I passed age 52 as that seemed to be the "majic" number related to heart problems in our family.

I have been tested for cholesteral and blockage and have very good cholesterol and zero blockage or build up in the arteries.  In my opinion, very strange.  But maybe not since we get half our genes from our mother and half from our father.  My father didn't have heart problems to my knowledge and he lived a very "clean" life.  He did not smoke or drink alcohol.  Can't say the same for the rest of the family.

I believe the Texas research has tremendous potential in finding the cause and possible cure for many diseases and conditions.  It truly amazes me how far this research concentrated in the heart has far reaching potential. I am very intriqued by this research.  I have a very good feeling these folks are on to something very big. It certainly looks hopeful.

Hugs,

Lore

Hi DJ,
  I am so excited about this news. I was diagnosed with two brain aneurysms before they fould I had mm. They coiled them and then had the by-pass. One year later I had a cardic arrest and had a defibrillator put in. About a year later I had a heart attack. I always wondered if it could be related and now I know. I have a family history of heart and coronary troubles. I lost my brother at the age of 36 and my mother at the age of 68. Now I wonder if this was passed on to me but the doctors had no idea what it was. I am going to have my children and grandchildern checked. Thanks, Sharon

It's been a while since something has been posted on the genetic research.  It is still going on - we received a call from Alana Cecchi @ UT Medical School Research Center just last week.  They have discovered what they refer to as an "alteration" on a specific gene that seems to be present in those w/ MM. Kyle's sample (that they took in 2007!) has this same alteration.  What's so exciting is that a group in Japan (where MM is more prevelant) doing genetic study has found the same alteration on the same gene in their MM patient samples. If you participated in the study and haven't heard from UTMS (Houston), you probably will as they intend to try to speed up the process of the study with these new findings/identical outcome with the Japan study.
With Kyle's sample being positive, they have asked other family members to submit spit samples for study. hope it doesn't take another 4 years to get feedback 

Sue