Sharing the stories of people with genetic conditions. Have a story you'd like to share? Email [email protected] No longer active on social media!
Brooklyn, NY
Joined October 2018
- Tweets366
- Following73
- Followers389
- Likes480
Patient Stories retweeted
My mom’s story has long made me feel weird about my place in the abortion conversation. But, my disability is actually not a weapon against abortion access, like I have been made to believe. It’s an argument for it.
My latest for @nytopinion: nytimes.com/2022/07/31/opini…
Patient Stories retweeted
If anyone wants a quick link to a petition for a call to NSGC to start taking Requests for Proposals from new firms to lobby the US Government for CMS recognition so that we might be able to turn our attention to lobbying for our patients, it's right here: chng.it/rPSbkmc2WD
Patient Stories retweeted
Just finished @ticktickboom on Netflix. I loved the movie so much and related on such a personal level as I also have Marfan Syndrome, the same condition that caused Jon Larson’s aortic aneurism. @Lin_Manuel I’m sad Marfans wasn’t mentioned but I loved the movie even so💖
Patient Stories retweeted
"There are many incredible medical professionals out there. But the ones I saw failed me when I needed them most," writes Mia Clarke.
washingtonpost.com/lifestyle…
Patient Stories retweeted
There are still a few spots left in the Patient Stories Club! The first meeting is Monday. You can sign up here: greygenetics.as.me/patient-s… #GCchat #genechat #genetalk #genetics #geneticcounseling
THE PATIENT STORIES CLUB IS BACK! This club will allow those interested in #geneticcounseling to engage in conversations between peers, facilitated by a certified #genetic counselor! You can sign up here: linktr.ee/greygenetics
#GCchat #genetalk #genechat #pregc
Patient Stories retweeted
You can listen to the new episode of Genotypecast discussing the recent @nytimes article here: anchor.fm/genotypecast/episo…
@katie_stoll @sarahkliff @aatishb #GCchat #NIPT #geneticcounseling #genetalk #medtwitter #genetictesting
NYT published an article focused on false positive rates in NIPS/NIPT. The reaction on Twitter from genetic counselors was mostly critical.
Listen to the new episode of Genotypecast to hear GCs Eleanor Griffith and @katie_stoll discuss the implications of this article. #GCchat
Patient Stories retweeted
NYT published an article focused on false positive rates in NIPS/NIPT. The reaction on Twitter from genetic counselors was mostly critical.
Listen to the new episode of Genotypecast to hear GCs Eleanor Griffith and @katie_stoll discuss the implications of this article. #GCchat
Patient Stories retweeted
Can’t get my recommended high-risk colonoscopy screening right now because I don’t have $800 toward a deductible lying around. My grandfather was dx at 29 with colon cancer and both my parents have had pre-cancer polyps in their 40s. Yay, American healthcare. 😑
Patient Stories retweeted
If you want to learn more about #EpidermolysisBullosa, check out our @GreyGeneticsPod episode with Silvia, who discusses her son's experience living with the condition: greygenetics.com/epidermolys… #GCchat #ebawareness #cureEB
A patient with #EpidermolysisBullosa who was treated with his own genetically modified skin cells is thriving 5 years after the initial treatment. @MeganMolteni #cureEB #EBawareness statnews.com/2021/12/08/last…
Patient Stories retweeted
We were saddened to hear about Nicky's recent passing, and our thoughts are with him and his family. If you are interested in supporting Nicky's family during this difficult time, you can donate for funeral expenses here: gofundme.com/f/nickyfuneral. #GCchat #cureEB #EBawareness
If you want to learn more about #EpidermolysisBullosa, check out our @GreyGeneticsPod episode with Silvia, who discusses her son's experience living with the condition: greygenetics.com/epidermolys… #GCchat #ebawareness #cureEB
Patient Stories retweeted
When @_GeorgiaHurst was on @GreyGeneticsPod, she discussed the consequences of ovary removal and gave insight into approaching #genetictesting thoughtfully. Thanks for spreading awareness, Georgia! greygenetics.com/she-with-ly… #GCchat
#gcchat - Please read this article by @_GeorgiaHurst. Are any of you aware of any efforts now to develop tools to help people at genetic risk for ovarian cancer to evaluate the risks, benefits and trade-offs of oophorectomy and the timing of risk-reducing surgery?
Patient Stories retweeted
Read about @JaniceWolly's experience as she makes the difficult decision to end a wanted pregnancy. It emphasizes the need for protecting abortion laws, which consider the women who are confronted with decisions like hers.
theatlantic.com/ideas/archiv… #GCChat #AbortionIsHealthcare
In 2017, I ended a wanted pregnancy, and in the years since, I've never seen the uncertainty of my own situation reflected in anyone else's experiences. So I wrote something. Here it is:
theatlantic.com/ideas/archiv…
Patient Stories retweeted
My cousin died of Covid yesterday. Healthy, vaccinated, now gone. Also found out yesterday that my childhood best friend just died in her sleep. Hold on to the ones you love, check in with your friends and family, take nothing for granted. ♥️
Patient Stories retweeted
🚨New internship!🚨 We are looking for a social media intern. We are looking for someone very familiar with using Instagram, Twitter, LinkedIn, and Facebook and with an interest in genetics/genetic counseling! Applications are now open here: docs.google.com/forms/d/e/1F… #GCchat
Patient Stories retweeted
Abortion access is once again making headlines, but why is abortion access important to the field of genetic counseling? Check out our latest News Corner post to find out! greygenetics.com/reproductiv… #GCchat #reproductivejustice #healthequity
Patient Stories retweeted
NEW EPISODE - Hebbah Sayed-Ahmad is a Palestinian American prenatal #geneticcounselor. She shares her experiences as a Palestinian within the genetic counseling profession. Listen here: anchor.fm/genotypecast/episo…
@TheDNArab #GCchat #FreePalestine #palestine
Patient Stories retweeted
"As a genetic counselor who has had an abortion, our organization’s continued silence stings. I have no negative feelings or regrets about having had an abortion, however NSGC’s lack of response on the essential nature of access to abortion care is hurtful."
True or False: #GeneticCounselors, as champions for autonomous and informed decision making, must prioritize outspoken advocacy for reproductive rights, access, & justice. I think you know my answer. #GCchat
Thank you, Jordan, for this piece. <3 thednaexchange.com/2021/05/1…
Patient Stories retweeted
Omg found a new, awesome podcast to add to my list! Two women w/ Hermansky-Pudlak syndrome talk about life, rare disease, navigating the world blind, disability advocacy, etc. #GCchat - check it out!
Welcome to our podcast! Two twenty-somethings with the same rare disease showcasing the beauty and normalcy in disability! You can find us on Apple, Spotify, or our website linked in bio. #disability #blind #raredisease #disabilitypodcast #podcast
Patient Stories retweeted
Check out my blog post on how #MS impacted me as a #geneticcounselor
#GCchat #nsgc #gcswithdisabilities
perspectives.nsgc.org/Articl…
Patient Stories retweeted
Want to celebrate #WorldDownSyndromeDay by learning more? Listen to these @GreyGeneticsPod episodes to hear patients and genetic counselors discuss Down Syndrome.
#GCchat #geneticcounseling #downsyndrome #Trisomy21
Join us in celebrating #WorldDownSyndromeDay! Each year, about 6,000 babies are born with Down Syndrome in the United States. Today is dedicated to celebrating these individuals and raising awareness. #worlddownsyndromeday2021 #GCchat
