judycolby 1 Report post Posted September 18, 2009 Just got an email from Dr. F. He has found an endo in England that would like vials of blood from Bill, Justin & Jess. He is looking for genetic mutations. I think that sounds exciting. I'm sure all three will agree to give up two vials each. Wouldn't it be great if this guy finds something, even if it's not from our blood. Just knowing that someone is looking at genetics is exciting. Judy Quote Share this post Link to post Share on other sites
gmcook3 3 Report post Posted September 18, 2009 Judy, that's awesome! I am just glad somebody out there is looking into this stuff. Knowing more about where the disease comes from is always a good thing. roll up sleeves and donate please! Gina Quote Share this post Link to post Share on other sites
fatnsassy 17 Report post Posted September 18, 2009 This sounds like great news to me! Congrats! Quote Share this post Link to post Share on other sites
diane177432 2 Report post Posted September 18, 2009 Who is the endo Judy? I am seeing a genetics endo team on Monday to discuss hereditiary brain tumours. Best of luck, Diane xx Quote Share this post Link to post Share on other sites
maecar 2 Report post Posted September 18, 2009 This is awesome Judy! I hope they find the link or mutation.... because we already KNOW that this has a genetic component. Quote Share this post Link to post Share on other sites
judycolby 1 Report post Posted September 18, 2009 I'm sure they'll all give their donation! Just need to talk to the lab about doing the draw and get instructions from Dr. F. Dianne, Dr. F didn't give a name but I'll ask when I email him. While I do find this exciting I have to wonder what can really be done if he does find a link. Maybe that is farther down the road. Judy Quote Share this post Link to post Share on other sites
alexsmom 6 Report post Posted September 18, 2009 Very cool! Maybe somewhere down the line it will do someone some good. Quote Share this post Link to post Share on other sites
viumber 0 Report post Posted September 18, 2009 Judy, I think they are finally figuring out that cushing's is genetic. NIH is looking into the micronodular adrenal hyperplasia. My grandaughter is probably going to NIH for further testing as she has been diagnosed withcushing's too. Will be looking forward to these studies. Violet Quote Share this post Link to post Share on other sites
rooon55 1 Report post Posted September 18, 2009 I Vant your blooood.......very cool Quote Share this post Link to post Share on other sites
Llama3234 2 Report post Posted September 19, 2009 While I do find this exciting I have to wonder what can really be done if he does find a link. Maybe that is farther down the road. My hope is that it can make the testing process easier for other people in the family. Although I'm sure you'd have to have a doctor that actually believes in Cushings... I'M GOING TO BE A GUINEA PIG!!! Quote Share this post Link to post Share on other sites
twinkie 16 Report post Posted September 19, 2009 VERY cool! love, melly Quote Share this post Link to post Share on other sites
jennyr 3 Report post Posted September 19, 2009 Sounds exciting...and it could provide Jess and Justin with some good information that may prove to be very important when the time comes when they want to start families. Jenny. Quote Share this post Link to post Share on other sites
judycolby 1 Report post Posted September 19, 2009 Jenny, actually, I'm encouraging my kids to adopt. I'm sure Bill's sister has it and we think there's a good chance his mom did too. Judy Quote Share this post Link to post Share on other sites
MelanieUK 2 Report post Posted September 19, 2009 How exciting! Do try to find out where the blood will be getting sent. I find it ironic that your family's blood is getting sent here and bits of one of my dodgy adrenals are getting sent to the US - playing swaps lol! Here's hoping all this research will do some good in the future. Quote Share this post Link to post Share on other sites
OregonChick 0 Report post Posted September 19, 2009 I'm really glad that someone is interested in Cushie blood! Curious about the relatives you mentioned. Did they look and or act Cushie? Did it skip any generations or stick to a gender? I swear, all of our adrenal glands should be cataloged and studied. Quote Share this post Link to post Share on other sites
MemberGone 2 Report post Posted September 19, 2009 Judy and Jess - this is very very cool. While I really feel so badly about what your family has gone through, god love you for using your expierences (and blood!) to help others in the future. Quote Share this post Link to post Share on other sites
Llama3234 2 Report post Posted September 19, 2009 I'm really glad that someone is interested in Cushie blood! Curious about the relatives you mentioned. Did they look and or act Cushie? Did it skip any generations or stick to a gender? I swear, all of our adrenal glands should be cataloged and studied. We don't know about his mom, because she's no longer a part of his life and he was adopted later in life. Now for his siter, she looks cushie and also has many symptoms. His brother used to look adisonian, but now, in my opinion, seems to look cushie and acts that way. He probably has other brothers and sisters, but they're lost in the mix, so that's as far back as we can go and we don't want to go down the other way in the line...or at least me:P. Dad wants to see if we could add his sister's blood in the mix to see if there can be a link even though she isn't diagnosed, just to see. But he hasn't asked Dr. F. about it. Quote Share this post Link to post Share on other sites
beetlebug 0 Report post Posted September 19, 2009 This is very exciting and a huge gift that you are giving to all of us. I hope the researcher can follow up with you and let you know what he learns about your family and how it might fit into the picture of Cushing's. You're all taking huge steps forward and making tremendous progress towards good health again. You are fantastic people to take the time to give back in this amazing way. Many thanks to each of you!! Bug Quote Share this post Link to post Share on other sites
judycolby 1 Report post Posted September 19, 2009 How exciting! Do try to find out where the blood will be getting sent. I find it ironic that your family's blood is getting sent here and bits of one of my dodgy adrenals are getting sent to the US - playing swaps lol! Here's hoping all this research will do some good in the future. If yours hasn't shipped yet, maybe they'll cross paths! That is kind of funny. I sometimes wonder if my generation will be around to see any big changes in the testing and dxing of Cushing's. Hopefully if we're not, the next generation will be able to reap the rewards. I also hope that we can find out what the researcher finds. Judy Quote Share this post Link to post Share on other sites
esg31 3 Report post Posted September 19, 2009 Judy, that is great! Any research that can be done to increase knowledge about Cushing's is well worth donating some blood. I'm so glad that someone is finally ready to explore the possibility of a genetic component for this. Can you imagine how many more cases might come to light if entire families now get tested? Ellen Quote Share this post Link to post Share on other sites
conti 4 Report post Posted September 19, 2009 ....There's a couple of them "after my blood" at the moment but not for research....for revenge. Great news Judy.......you'll put Colby on the map again. Dave Quote Share this post Link to post Share on other sites
da89165 4 Report post Posted September 19, 2009 I think you need to stipulate that they name any discovery "Colby", vs. the docs last name!!!! I'm really glad someone is reseaching this and that Dr F has helped make the connection to your family. Thanks for sharing such exciting news, this is really great!!!! Quote Share this post Link to post Share on other sites
diane177432 2 Report post Posted September 21, 2009 Hi Judy, The people I am seeing today are in the Genetics Endocrine Unit at Addenbrookes Hospital in Cambridge, UK. Their names are Dr Soo-Mi Park and Dr Helen Simpson. As I recently found out my step-brother was rushed to hospital with a tumour and has been diagnosed with cancer and also my Grandad adn Uncle on my Dad's side had brain tumours as well as my Nan on my side, we need to find out whether this will effect our son as well as my step-siblings off spring (half brother and sister on my fathers side). I cintacted my endocrine consultant Dr Mark Gurnell and he got me to contact my neurosurgeon Professor John Pickard and I git the referal. Fingers crossed, we all get some answers and can beat this. Best wishes, Diane xx Quote Share this post Link to post Share on other sites
Kathryn G 1 Report post Posted September 21, 2009 Judy, How exciting! I hope they get some answers and quickly. Keep us posted. Kate G Quote Share this post Link to post Share on other sites
kimberlyA 2 Report post Posted September 21, 2009 Judy, That is great news. You guys are doing a wonderful thing for future generations and should be very proud of yourselves for everyone that you will help. We are all very proud of you. Kimberly Quote Share this post Link to post Share on other sites
