Announcements of drug trials and other treatment information


Postby oleblue » Wed Aug 24, 2016 2:55 pm

How you have all had the opportunity to read the article about the research going on at Yale University. You can read all about it by going on Facebook and search for Angioma Alliance. The physician is Dr. Wang Min PHD who has possibly found a way to cure this disease, but all things take time to become reality as we all know. Here is a picture of this man who is fighting for us. Our next "Super Hero".

http://medicine.yale.edu/pathology/peop ... in.profile

http://news.yale.edu/2016/08/22/researc ... in-disease
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Postby Connie Lee » Fri Aug 26, 2016 4:12 pm

Thanks for posting this. Amy Akers, our Chief Scientific Officer, has offered a somewhat less technical version. FYI - despite Yale's press release, this research is pretty specific to the CCM3 mutation. From Amy:

"In a new study, the research team of Dr. Wang Min at Yale identified a possible new target for CCM drug development.

Their study was published this week in the high-profile journal, Nature Medicine. In previous work, this team identified that CCM3 is involved in exocytosis, a process by which cells move materials outside of their surrounding membrane. In the current study, they identified an important role for CCM3 in regulating the relative distribution of Angiopoietin 2 in and outside of blood vessel cell. Angiopoietin is an important regulator of blood vessel stability and is a necessary component of vessel development. When CCM3 is deficient because of a mutation, angiopoietin accumulates outside of the cell. This accumulation results in destabilization and swelling of the blood vessels as well as loss of structural support – these are hallmark features of CCM lesions.

The significance of this work is that the researchers identified a biological mechanism by which CCM3 mutations alter blood vessel structure and contribute to CCM disease. Furthermore, they showed in mice, that by blocking the accumulation of angiopoietin with a specific antibody, they are able to reverse the effects of the CCM3 mutation and inhibit lesion formation. These data suggest that angiopoietin could be a future target for CCM drug development."
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
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Postby oleblue » Fri Aug 26, 2016 6:25 pm

Dear Connie and Dr. Akers and all the Staff @ Angioma Alliance,

Thank you for putting this in the forefront, Dr. Min has "hopefully" found a way to help cure or minimize this disease. Our family received this breaking news at a time that my husband had just came out of the hospital for his CCM. This article lifted our spirits.

Again thank you all for walking with us and hearing our prayers to cure this disease. Genetic diseases take their toll on a family and generation. We walked for so long with no hope, no knowledge, no one that understood, until you came along. Bless you all.

Deepest Regards,

David & Barbara Curtis
Warren, Oregon
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Postby Elizabeth » Sat Aug 27, 2016 4:12 pm

Great news!!! Thanks for sharing!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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