ihavelynchsyndrome.org, #LsChat, Camille Grammer, and The Center for Jewish Genetics…
Well, this year has certainly started off with a bang! Lots going on this way and I am making great progress in the Lynch syndrome advocacy front. I have completed and filed all of the documentation for my 501(c)(3) status! Much gratitude to John, my hubby, for his unwavering support, work, love, and patience with assisting me with this arduous process! I am still in the process of changing the site over to ihavelynchsyndrome.org and modifying a few of the site’s pages within the next few weeks. No worries, if you punch in ihavelynchsyndrome.com or net, you will still be directed to ihavelynchsyndrome.org. Just so you know, I will still be blogging once a week on this site, along with moderating monthly Lynch syndrome Twitter chats, writing for medical publications and esteemed websites; but most importantly, I will continue to listen, talk, and to help those of you with Lynch syndrome, as much as I possibly can, who reach out to me every day.
We had our first #LynchsyndromeChat last week and it was highly successful! Thank you to Amy L. for putting this transcript together for me! You may read the transcript here: http://goo.gl/alDO0g
Please mark your calendars! I will be holding another chat on Sunday, 2/8/2015 at noon (CST) and will be discussing the emotional implications of having Lynch syndrome. I am trying my best to accommodate everyone and their schedules and am hoping for more international interaction, hence the time and day it will be held. My hopes are that you can join us for the chat; it’s a stellar way to meet and connect with others who are either patients, advocates, or professionals such as doctors and genetic counselors. Please use the #Lschat. More importantly, it’s the best way to reach thousands of people and to educate them about Lynch syndrome. I encourage all of those within the Lynch syndrome community who are truly serious about increasing and improving their advocacy efforts to participate. If you need a little tutorial on Tweet chats, please click here: http://etcjournal.com/2013/06/19/a-beginners-guide-to-twitter-chat-participation/. I will also be reminding everyone of the chat as we get closer to the date.
Speaking of Twitter chats, I would like to show the BRCA community some #BigLove for adopting me into their amazing community and teaching me a lot about what fantastic advocacy looks like. Many of the BRCA advocates have been some of my greatest teachers and closest friends this past year and I would not have been able to do my recent Tweet chat without them and their unwavering support. Infinite gratitude and love to them, especially to Amy (My Cupcake), Nicki, Lisa, Karen, Andrea, and Tobey.
Big news came out on Thursday. Camille Grammer from The Real Housewives of Beverly Hills was on The Doctors and discussed her endometrial cancer due to Lynch syndrome. You may read more about Camille’s appearance on the show here: http://thedoctorstv.com/articles/2888-camille-grammer-s-battle-with-endometrial-cancer and via The BRCA Responder’s Storify: http://goo.gl/9vIHks.
I also had the distinct pleasure of meeting with a few people at The Center for Jewish Genetics yesterday. I was thrilled to meet their new director, Jason Rothstein and look forward to collaborating with them in the very near future. One more thing, Lisa Sylvest from the University of Michigan just sent me this piece about her family history in regards to Lynch syndrome and I wanted to share it with all of you. http://www.mcancer.org/living-with-cancer/caregivers-and-family/trust-your-instincts
In the meantime …