robin
Registered: 03/02/08
Posts: 12
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| #1 |
My father passed away this past August 15th from Cadasil. It has been a hard time for my family, especially because there are 6 siblings. 2 of us have
already tested positive and 2 others seem to display many of the symptoms. We have many wonderful nieces, nephews, and ofcourse our own children. So on and on it goes... Well, my family is determined to do something about it. What better incentives-right? For about the past year or so, my family has been working with some of the most amazing doctors and neurologists back at Mass General Hospital in Boston. They seem to have much interest in this condition. At this time, we are working with them to plan a symposium back in Boston. This would be an opportunity for some of the leading doctors in this field to come together and communicate information with one another. It would also be an opportunity for patients and their families to come and meet with these doctors and really have a chance to talk with these doctors and maybe even get some real answers to some of the questions that we all have. It would also be a wonderful opportunity for Cadasil patients and their families to be able to come and meet with those that are dealing with the same struggles. My family is also in the "legal" process of setting up a foundation dedicated to the sole purpose of raising money for research into treatments and a cure for cadasil. The doctors that we have worked with so far are very optimistic about finding treatments and even a cure. But they all say it's about getting organized. We can do this!!! If anyone is interested, have questions, or suggestions, we would love to hear!!
Thanks,
The Russells
(SLC)
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Carla
Registered: 03/24/08
Posts: 25
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| #2 |
Robin, thank you for your efforts in raising funds and awareness of this rare disease. I have Cadasil as well, as does my father. Luckily, both my sisters tested negative, so my nieces and nephew are ok. I'm sorry about your father's passing. My heart goes out to your family.
I totally support the idea of a symposium. I'm on the West coast, in San Francisco. My doctor, Dr. Rose, is the director of the comprehensive stroke program at CPMC. Another doctor out here who studies Cadasil is Dr. Geshwin at UCSF. Dr. Geshwin is more interested in the behavioral and cognitive aspects of Cadasil and other rare diseases, whereas Dr. Rose works directly with stroke patients. I think bringing patients, doctors, and researchers together in one place is critical for sharing knowledge and ideas, for staying current on the research, and for giving us patients some hope. Columbia University also is pretty involved in Cadasil research, as well as Brown University (which has a Cadasil program for patients.) There is no shortage of people to participate in an event like this.
If there is a way for me to help, let me know. One thing, though, is I'll be in Italy from November to end of January. While I'm there, maybe I can try to find doctors who might be interested in participating or attending? I know there are doctors/researchers there who are working on this. There's even a Cadasil registry in Tuscany, where my father is from.
Thanks again and keep me in the loop...
Carla
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real
Registered: 09/06/07
Posts: 17
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| #3 |
Robin
Count me in. I live in bay area - going to see Geshwin in Dec. Yes - I have cadasil and the clock is ticking. We need more exposure to the medical community. Billie and steve have done great but they need help.
Real
John (45)
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robin
Registered: 03/02/08
Posts: 12
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| #4 |
Thank you guys so much for your replies. My family believes very strongly that there is a great need to bring everyone together and to get organized. There is a huge need for more communication between the doctors. We really have the potential of making some real progress in this disease right now. One of my Dad's best friends is a doctor at Massachusetts General Hospital, and is one of the founders of the American Thyroid Foundation. He has now taken this on as his new "cause". He has introduced us to some amazing neurologists from Mass General that have a great interest in cadasil. They have been working with us in planning the symposium. We have also been working hard in raising the money for the cost of the symposium, and have had some great progress. We will definately keep you all the loop! My family is also in the legal process of starting what will be known as the Cadasil Research Foundation. The entire purpose of the foundation will be to raise money for research and an eventual cure for Cadasil. |
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snoepeke
Registered: 09/12/07
Posts: 26
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| #5 |
wish I was in the USA, so I could help also!! Here in belgium, the doctors do not know much about cadasil so...
I have a new neurologist and going to see him for the second time next week! I am educating him a bit about cadasil, but normaly it should be the way around, is it not?
My formal neurologist that I had much faith in, stopped working because he has MS and could nog go on anymore!
Is there anything , anything at all that I can do here in Belgium to help you people, pls let me know!Or is there anything that I can start here to get the people knowing about cadasil? I have not a clue about things like that!
but Pls explain it to me in as plain english as you can because it is sometimes difficult to understand for me.
Much greetings
sylvia (40 cadasil since 34)
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I have cadasil since 2002 |
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Carla
Registered: 03/24/08
Posts: 25
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| #6 |
Robin, that sounds great. I'm very excited at your efforts and look forward to contributing to this symposium, and other efforts such as the research foundation, in the coming weeks/months/years. Thanks again.
Also, Syliva, we could use all the help we can get to spread information about Cadasil to doctors everywhere! Educating your neurologists about it is a great start. (I and many others over here have had to do the same thing, unfortunately.)
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cdeller
Registered: 01/23/09
Posts: 2
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| #7 |
My husband died 7 years ago of the disease, and it's taken me this long to work up my nerve to read what's on this website!!Count me in as well!I think that there are many more people who have this illness. They have, however, been diagnosed as having something else because it is such a little-known disease. I have 4 children and 5 grandchildren. I desperately want a cure to be found before it is too late for them!!!
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Bowdoin44
Registered: 03/09/09
Posts: 8
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| #8 |
Robin, I haven't seen a date or definate plans for the symposium. I saw my neurologist here in Maine yesterday and he is interested in attending the symposium. Do you have any more info that I can send him?
Thanks Beth
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gettesaba
Registered: 04/09/09
Posts: 3
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| #9 |
Hi everyone. My father was just diagnosed with CADASIL last week at age 53 after having had 2 small strokes last year. Needless to say, I'm still working through the initial shock/anger/fear as he's the first one in the family to have a confirmed diagnosis by genetic testing. His brother only had a clinical diagnosis based on MRI findings, so there was still hope that his brother had been misdiagnosed. I am a genetic counselor (what are the chances, right?) and am very interested in helping to arrange a symposium. Robin or anyone else, if you are still working on this, definitely contact me!
Georgette
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Byds
Moderator
Registered: 08/26/07
Posts: 21
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| #10 |
We would to hold a conference on CADASIL. CADASIL needs to be known worldwide. We hope to work with someone who has already done a medical conference with the experience and it will have to be done with funding as being a small non-profit we do one have the funding for a conference.
Billie
CADASIL Together We Have Hope
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Billie |
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Scootermac13
Registered: 07/13/09
Posts: 1
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| #11 |
Hello All, I am new to the group. Just got diagnosed with CADASIL a few in June.
I know that a symposium seems out of reach being a small non-profit group. Are there any plans for another fund raising event this year?
Scott
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Byds
Moderator
Registered: 08/26/07
Posts: 21
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| #12 |
We am working with another foundation to hold a conference which probably would be next year (no date set) May or later.
Any ideas for fundraising projects or individuals who could raise funds to be earmarked for this pending conference.
Thank you
Remember Together We Have Hope!
http://www.cadasilfoundation.org
Billie
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Billie |
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