DownSyndrmePregnancy @DownSynPreg
University of Kentucky program providing balanced, honest, compassionate info & support for parents in their pregnancy after a Down syndrome diagnosis. DownSyndromePregnancy.org Lexington KY Joined April 2011-
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Come chat with us at booth 104 about how to earn 0.5 free CEUs for our online course thanks to a generous sponsorship from the @NDSS! #NSGC22
We don’t have any fancy snacks or swag at booth 104, but we do have awesome and free nationally-recommended patient resources about genetic conditions. Come visit us during the reception! #nsgc22
The @US_FDA has issued a warning about misleading marketing from #NIPT prenatal testing companies: nytimes.com/2022/04/20/ups…
Today we're warning the public of false results and other risks associated with non-invasive prenatal screening (NIPS) tests, also called cell-free DNA tests or non-invasive prenatal tests (NIPT). fda.gov/news-events/pr… - @FDADeviceInfo
I am a genetic counselor who has been concerned about the overselling of prenatal genetic tests for years. I was glad to see this safety communication published by @US_FDA. And I have concerns about some of the misinformation in this recent segment on @GMA. Fact check thread/
Waiting Game: This article describes the experiences of women who received blood tests or ultrasound findings indicating high chances for Down syndrome but declined an amnio or CVS to know with more certainty. ow.ly/P27U30jjPKD
“Coping with Loss: Down Syndrome”: For those families of children with Down syndrome who experience miscarriage, stillbirth, or loss. ow.ly/IKAy30jjycw
What will baby need? (It’s a Baby Shower!): This article includes a list of baby shower items recommended by other moms for babies with Down syndrome to celebrate and prepare for the birth of your little one. ow.ly/jK9z30jjPQO
Request brochures for medical offices or gift baskets that show where to find all of our free Down Syndrome Pregnancy and Lettercase online resources: resources.lettercase.org
Who was I then? Who am I now?: This article describes how children with Down syndrome have changed their parents over time. ow.ly/JznT30jjPW2
Request brochures for medical offices or gift baskets that show where to find all of our free Down Syndrome Pregnancy and Lettercase online resources: resources.lettercase.org
Working Moms: This article talks about different ways working moms coordinate their schedules and childcare to make it possible to be a parent and also work. ow.ly/H50530jjPZ8
“Welcoming a Newborn with Down Syndrome”: Book for parents of newborns with Down syndrome. Covers topics like adjusting to a diagnosis, preparing siblings, medical issues, preparing for the future, etc. Print and free online. ow.ly/y9ab30jjo4S
Your Prenatal Care: This article discusses how extra medical care can be helpful during a pregnancy when the baby has Down syndrome. ow.ly/Qf9d30jjQ4g
Libros gratis: "Del diagnóstico al nacimiento”: Una guía para las mujeres embarazadas de un bebé con síndrome de Down" y "La bienvenida a un bebé con síndrome de Down: Una guía para nuevos padres ow.ly/wg4F30jjxRr
Happy Heart Health Month! Heart Moms: This article covers articles and resources about heart conditions common to babies with Down syndrome and shares stories from parents who have experienced surgery. ow.ly/xuIg30jjHDE
“Diagnosis to Delivery”: Book for parents preparing for the birth of a baby with Down syndrome. Covers preparing for NICU, telling friends and family, preparing sibling & more. Print or free online. ow.ly/lp0Y30jjkcN
Libros gratis: "Del diagnóstico al nacimiento”: Una guía para las mujeres embarazadas de un bebé con síndrome de Down" y "La bienvenida a un bebé con síndrome de Down: Una guía para nuevos padres ow.ly/wg4F30jjxRr
Creating & Evaluating Your Birth Plan: Provides templates for birth plans & doctor letters from expectant moms to their obstetricians about their concerns, expectations & desires for their pregnancy when preparing for the birth of a baby w/ Down syndrome. ow.ly/22kn30jjG8V
“Diagnosis to Delivery”: Book for parents preparing for the birth of a baby with Down syndrome. Covers preparing for NICU, telling friends and family, preparing sibling & more. Print or free online. ow.ly/lp0Y30jjkcN
Global Down Syndrome .. @GDSFoundation
22K Followers 7K Following GLOBAL is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.National Down Syndrom.. @NDSS
19K Followers 2K Following NDSS empowers individuals with Down syndrome and their families.Down's Syndrome Assoc.. @DSAInfo
22K Followers 3K Following Supporting people who have Down's syndrome to live full and rewarding lives.#wouldntchangeathing @Wouldntchangea1
8K Followers 2K Following Making negative perceptions of Down Syndrome a thing of the past.Brian Skotko @brianskotko
4K Followers 234 Following International expert on Down syndrome. Director @MGHDownSyndrome. Medical geneticist @mghfc. Enthusiast of https://t.co/vpU3CVatVr. Views my own.Canadian Down Syndrom.. @CdnDownSyndrome
7K Followers 925 Following Canadian Down Syndrome Society (CDSS) is the national source of expertise promoting the abilities and contributions of people with Down syndrome. #SeeTheAbilityDSWorkFit @DSWorkFit
2K Followers 1K Following Connecting employers and employees who have Down’s syndrome. Developing employment opportunities with free, expert support, advice, resources and training.Colette Lloyd @ColetteLloyd
2K Followers 3K Following Proud mum to four young adults. Speech and language therapist. ✝ Passionate about Truth. Light. Love. Wisdom. #inclusion #downsyndrome #ethics #chocolateBelarmino @BelarminoT21
3K Followers 5K Following Business Optimization Professional | UT Austin alum | Customer Experience and Emergency Management StrategistDSA Toronto @DSAToronto
2K Followers 1K Following Down Syndrome Association is a registered Canadian Charity helping promote the VALUE, ACCEPTANCE & INCLUSION of people with Down syndrome. 🖱️website for events.Down Syndrome IRL @DownSyndromeIRL
11K Followers 6K Following Providing a voice for people with Down syndrome & their families throughout Ireland.💜 #ShareTheJourney DONATIONS ALWAYS WELCOME👉https://t.co/Q3bpphL9VxWorld Down Syndrome D.. @WorldDSDay
13K Followers 346 Following Join us on 21 March to ask the world to #EndTheStereotypesPortsmouth Down Syndr.. @PortsmouthDSA
3K Followers 1K Following Rachael Ross MBE – Chair & Fundraising Dir. Providing friendship, support and educational services to children with Down syndrome and their familiesEric Waksmunski @Ericwaxy
2K Followers 3K Following Dad of 3, including twins with Down syndrome. Shane and Wyatt @shaneandwyatt1, Rutgers, Bucknell, Lehighton, Navy Vet & advocate 4 special needsDr. Elizabeth Head @ElzHead
4K Followers 4K Following Professor, Dept Path @UCISOM, @ucimind @UCI_CFAR_DS, @abc_ds_ Aging and Alzheimer disease in people with Down syndrome, 🇨🇦, https://t.co/CX1ahHRnR8Down Syndrome Resourc.. @DSRFcanada
3K Followers 460 Following DSRF provides comprehensive support, rich social connections, and the best resources available so people with Down syndrome and their families can thrive.. @bbqch1
9 Followers 3K FollowingIrish Mammy @TeamInclude
19 Followers 255 Following Mum to bunch of kids, one with Down Syndrome. Down Syndrome community advocate. #DownSyndrome #Inclusion #Community EngagementDS Biome - Down Syndr.. @DS_biome
226 Followers 469 Following Down Syndrome Microbiome Research Initiative; Citizen Science, focusing exclusively on studying the microbiota of persons with Down Syndrome.Team Up @TeamUpInclusion
377 Followers 894 Following TeamUp's innovative buddy system allows people with Down Syndrome to receive support in a group setting. Opportunity for two-way learning. InclusionForAll.Emily Celestial @CelestialE76642
7 Followers 984 FollowingSpecial Kids Moments .. @SpecKidsMoments
1K Followers 3K Following Special Kids Moments is dedicated to showing the incredible potential of kids with special needs and the positive impact of their empathy and boundless love.prenatalin Health @Osm_Ben_
18 Followers 144 Following Being healthy enables us to live life to the fullest and do the things that we love. It offers us the invaluable mobility and freedom to do what we wantDoc Salado @DocSalado
22 Followers 192 FollowingHope House @HopeHouseCenTex
5 Followers 22 Following Official Twitter for Hope House Central Texas! Providing forever care to the severely disabled for over 50 years!Down Syndrome Associa.. @DSAHamilton1982
31 Followers 62 FollowingSophia PLS @sophiagroup16
1K Followers 5K Following SPLS provides support following the tragic loss of a baby through miscarriage, stillbirth, ectopic pregnancy, TFMR and neonatal death.Registered charity 1171082GLADS @GLADS321
6 Followers 58 Following GLADS is 501©3 organization that promotes Down Syndrome awareness & the encouragement of expecting parents to choose life for their child. If parents are unableKenneth Maguire @kennethmag69
362 Followers 2K Following Campaigning to stop the premature deaths of people with Down Syndrome and learning disability like my sister Jackie in care who died tragically in 2017 aged 52.DruzyCare @DruzyCare
88 Followers 920 Following Welcome to DruzyCare your trusted source for accurate and reliable health information. We share information about pregnancy, childbirth, baby, motherhood.Pamela Clark @pm_cla40961
9 Followers 77 FollowingRachel Sandoval @iWantThatGoodi
599 Followers 4K Following Selling this and that to help my daughter pay off mountain high college loans! Making deals on eBay, Mercari, Facebook and others, ask for details.Blanche @SarahBu71221681
129 Followers 510 Following You think you want to die, but in reality you just want to be saved.DNSF @DNSFYorkshire
88 Followers 232 Following Group of parents supporting, promoting & raising #DisabilityAwareness in Yorkshire. Supporting children, parents & siblings with activities, meetups & educationBaby Starters @BabyStarters
106 Followers 520 Following Everything a new mom needs for the first year with her baby.Tracy Churchman @tracychurchman
472 Followers 1K Following Director of Development at Best Buddies NTX•Project Management•Educator•Down syndrome Mama•App-enthusiast•Advocate•Embracer of InclusionFaithy's beddings @Mummycoco2
42 Followers 576 Following ⭐we solve all your bedding needs💯% Best quality beddings🥂🎉wholesale & RetailMalindians @malindians
2K Followers 4K Following MALINDI KENYA | Tourism information Center | Hotels |Attractions | Beaches | Things to do | @bizmbele Awardee 📧:[email protected] ☎: +254723734066Capital Area Down Syn.. @CADSALansing
89 Followers 280 Following CADSA is a nonprofit organization that supports people with Down syndrome and their families in the Mid-Michigan area.ParoleFertili @ParoleFertili
3K Followers 2K Following La ricerca di un figlio è un viaggio, e come ogni viaggio è fatto di momenti belli e di momenti difficili. Racconta la tua storia su #ParoleFertili #FertilitàDino Cave Kids SPEECH.. @dinocavekids
1K Followers 739 Following Dino Cave Kids - Speech English Phonics Practice Videos for KIDS-TEACHERS/ENGLISH-PARENTS-SPEECH-LANGUAGE PATHOLOGISTS-MULTI-SENSORY TEACHING-SOUNDS /LETTERSMR OBSTESTRICS @MrObstestrics
82 Followers 328 FollowingAlyxTheGC still spook.. @IScienceOK
291 Followers 348 Following Genetic counselor (accepts all pronouns) Opinions are my ownDevin Marie @dmp_isaCGC
382 Followers 572 Following Maryland Genetic Counselor. OSUGCGP Class of 2022. Cat mom, Star Trek enthusiast, scientist. 🧬😻✨👩🔬 She/Her/Hers. All views are my own.Erin Royer 🇺🇲 @lucifErinR
528 Followers 2K Following she/her. Nerd. Theatre kid. Genetic Counselor. Progressive. It's all our flag.Diane @speardiane52
25 Followers 170 Following Jeremiah 29:11. Saved by Grace…Love my family. Joy found in each day. Finding passion and purpose for the rest of my life. ✝️Down Syndrome Associa.. @dsapittsburgh
102 Followers 162 Following The Down Syndrome Association of Pittsburgh is a group of parents and professionals dedicated to enriching the lives of people with Down syndrome.Relax and subliminal @relaxsubliminal
7 Followers 112 Following Lots of nature and music and sounds to relax, study and sleep well. Much peace to all, welcome to my channel!Aries Kam @gan_aries
92 Followers 1K Following Commissioning Editor, Clinical and Experimental Obstetrics & Gynecology (ISSN: 0390-6663, SCIE, IF: 0.2), IMR PressLaura Traynor @DSSLauraT
139 Followers 637 Following Family Support Service Officer with Downs Syndrome Scotland, West Of ScotlandNeha Naik @NehaNai02611741
205 Followers 3K Following I am international community communication vice president and special Olympics sports team leadershipHigh Risk Pregnancy C.. @HighRiskPregGA
232 Followers 463 Following Maternal-Fetal Medicine. Specializing in high-risk pregnancies.Special Olympics @SpecialOlympics
119K Followers 2K Following Join our athletes leading the #InclusionRevolution and help us build a more inclusive world.Vardhan Fertility and.. @VardhanFertili
685 Followers 5K Following Vardhan has been providing quality IVF care with internationally comparable services and successes rates.Lucky @JoyfulCathryn
8 Followers 146 FollowingPlanet Penguin Footba.. @BrentfordPFC
1K Followers 1K Following Nihil Impossibile Est. Former Bees Legend Allan Cockram presents the first Official Brentford Football Club for players with Down's SyndromeAlans Activity Books @BooksAlans
8K Followers 9K Following Books for the future of #downssyndrome #sindromededown and for the future of Alan Fun activities in English and Spanish!Global Down Syndrome .. @GDSFoundation
22K Followers 7K Following GLOBAL is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.National Down Syndrom.. @NDSS
19K Followers 2K Following NDSS empowers individuals with Down syndrome and their families.Down's Syndrome Assoc.. @DSAInfo
22K Followers 3K Following Supporting people who have Down's syndrome to live full and rewarding lives.Brian Skotko @brianskotko
4K Followers 234 Following International expert on Down syndrome. Director @MGHDownSyndrome. Medical geneticist @mghfc. Enthusiast of https://t.co/vpU3CVatVr. Views my own.Canadian Down Syndrom.. @CdnDownSyndrome
7K Followers 925 Following Canadian Down Syndrome Society (CDSS) is the national source of expertise promoting the abilities and contributions of people with Down syndrome. #SeeTheAbilityNational Human Genome.. @genome_gov
81K Followers 446 Following Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. https://t.co/4hdQRFkFNUDSA Toronto @DSAToronto
2K Followers 1K Following Down Syndrome Association is a registered Canadian Charity helping promote the VALUE, ACCEPTANCE & INCLUSION of people with Down syndrome. 🖱️website for events.Down Syndrome IRL @DownSyndromeIRL
11K Followers 6K Following Providing a voice for people with Down syndrome & their families throughout Ireland.💜 #ShareTheJourney DONATIONS ALWAYS WELCOME👉https://t.co/Q3bpphL9VxWorld Down Syndrome D.. @WorldDSDay
13K Followers 346 Following Join us on 21 March to ask the world to #EndTheStereotypesEric Waksmunski @Ericwaxy
2K Followers 3K Following Dad of 3, including twins with Down syndrome. Shane and Wyatt @shaneandwyatt1, Rutgers, Bucknell, Lehighton, Navy Vet & advocate 4 special needsDown Syndrome Resourc.. @DSRFcanada
3K Followers 460 Following DSRF provides comprehensive support, rich social connections, and the best resources available so people with Down syndrome and their families can thrive.DS Family Network @DSFamilyNetwork
660 Followers 181 Following We hope to provide a network in which loved ones of persons with Down Syndrome are able to access the resources, support and answers they need #inclusionmattersDown Syndrome Associa.. @DSAHamilton1982
31 Followers 62 FollowingHope House @HopeHouseCenTex
5 Followers 22 Following Official Twitter for Hope House Central Texas! Providing forever care to the severely disabled for over 50 years!margie doyle @margiedoyle1
95 Followers 68 Following Director of Development and Research Sponsorship https://t.co/ZmApd8YzPM mom to 5GiGi's Playhouse West.. @GiGisWNY
108 Followers 339 Following Down Syndrome Achievement Center in Ardsley, NY providing FREE educational & therapeutic programs to individuals with Down syndrome, their families, & communityJaime Herrera Beutler @HerreraBeutler
60K Followers 910 Following Proudly serving my home, Southwest Washington’s beautiful 3rd District, in the U.S. Congress.Sophia Adelson @AdelsonSophia
234 Followers 475 Following @StanfordMed Genetic Counseling ‘25, @Genomes2People GCA/RA, @WellesleyCollege ‘21, she/herDSA of Central FL @DSAofCentralFL
857 Followers 622 Following DSACF is an award-winning nonprofit that is the only Florida DS support organization that serves more than 1200 people with DS in a 10+-county area.Devin Marie @dmp_isaCGC
382 Followers 572 Following Maryland Genetic Counselor. OSUGCGP Class of 2022. Cat mom, Star Trek enthusiast, scientist. 🧬😻✨👩🔬 She/Her/Hers. All views are my own.Courtney Gwynne (Leon.. @CGtheGC
574 Followers 908 Following Cardiovascular Genetic Counselor @MGHHeartHealth | @ColumbiaGCP ‘23 | she/her | thoughts are my own | 🧬🐱🫀🎨 🏳️🌈Jo Becerra @MsLadyJo
1K Followers 2K Following Genetic Counselor, Blogger, Building tools to help GCs stay LCGCs, https://t.co/xF9fvY6qYX with @DavidVIIErin Royer 🇺🇲 @lucifErinR
528 Followers 2K Following she/her. Nerd. Theatre kid. Genetic Counselor. Progressive. It's all our flag.Kate Wilson @Katencstate
1K Followers 1K Following Chicken impersonator, inappropriate crafter, nerdy genetic counselor. She/Her. These are my own thoughts. #GeneChatEmily Hardisty (she/h.. @GC_CGC
525 Followers 795 Following Certified Genetic Counselor. I believe science is real, abortion is healthcare, and love is love. All opinions are my own. On mastadon @[email protected]GiGis Playhouse Houst.. @GiGis_Play_Hou
222 Followers 207 Following Our vision is to see a world where individuals with Down syndrome are accepted and embraced in their families, schools, and communitiesEllen Armendáriz Stu.. @EllenStumbo
3K Followers 2K Following Writer - Mexican Immigrant - Chilanga - Musa Hermana #lasmusas - #PitchWars alumn - rep: @thejordache at @awfulagentGiGi’s Playhouse At.. @GiGisAtlanta
558 Followers 323 Following GiGi’s Playhouse is a network of Down Syndrome Achievement Centers that provides free therapy for individuals with T21. #GigisPlayhouse #DownSyndromeGiGi's Playhouse of M.. @GiGisMcHenry
260 Followers 103 Following We change lives through consistent delivery of FREE educational, therapeutic-based and career development programs for individuals with Down syndrome!AlyxTheGC still spook.. @IScienceOK
291 Followers 348 Following Genetic counselor (accepts all pronouns) Opinions are my ownKatie Lang @kaflang
270 Followers 2K Following New Englander in Nashville. Genetic Counselor. Fan of general nerdery. Not the singer. She/Her 🏳️🌈Rachel Mills, MS, CGC @doublehelixTAT
2K Followers 547 Following I love genetics and I have the tattoo to prove it. certified genetic counselor, assistant professor, PhD pursuer, soapbox stander. she/her/y’allCarrie Guy, MS, CGC �.. @CarrieGuy
798 Followers 897 Following she/ her, 🧬 #HR3876 #AccesstoGCs All tweets are my own.Melanie Hardy, MS, MS.. @mwhardy47
645 Followers 1K Following Genetic counselor, dog-lover/owner of the greatest dogs on earth, fan of desserts.katie sagaser (she/he.. @katiesagaser
1K Followers 1K Following outreach & advocacy @23andme genetic counselor & brand strategist. femtech, health equity, health policy, repro, #MedEd things. tweets & opinions mineAmerican Board of Gen.. @ABGCertifiedGCs
3K Followers 478 Following ABGC is a non-profit organization that certifies & recertifies #geneticcounselors. In 2022 we surpassed 6,000 #CGCs #6000Strong. Voted 1 of top 10 jobs @usnewsThe Beagle Has Landed @beaglelanded
2K Followers 2K Following A podcast for the #geneticcounseling community hosted by @laurahercher. https://t.co/PtFhraHR0qMVDSA @mvdsa1977
226 Followers 187 Following The MVDSA's mission is to provide information, support, and resources to individuals with Down syndrome, their families, and their communities.DSAV @dsav_321
365 Followers 429 Following The Down Syndrome Association of the Valley: Advocacy, education & opportunity for people w/ Down syndrome, their families & communities Eastern OH & Western PACVDSA @CVDSA_GA
185 Followers 181 Following The Chattahoochee Valley Down Syndrome Association is here for the individuals and families of those with Down syndrome in our community.Kelly Kulzer-Reyes @kulzerreyes
337 Followers 1K Following advocate, educator, partner, and mom of threeDown Syndrome Network.. @DSNWV
178 Followers 61 Following The Down syndrome Network of West Virginia (DSNWV) is a 501 C3 non-profit organization established in 2002 by concerned parents of children with Down syndrome.Down Syndrome of Sout.. @dsskybuddyhouse
341 Followers 80 Following OUR MISSION is to enhance the quality of life for individuals with Down syndrome.DSSRI @DSSRhodeIsland
413 Followers 84 Following DSSRI is dedicated to promoting the rights, dignity and potential of all individuals with Down syndrome through advocacy, education, public awareness & support.DSASBC @dsasbc
454 Followers 180 Following Down Syndrome Assoc. of Santa Barbara County. Enhance the lives of individuals with DS & their families promoting acceptance and inclusion.FRIENDS Tri-Cities @dsFRIENDStri
229 Followers 51 Following FRIENDS Down Syndrome Support Group of the Tri-Cities. TN/VA/NCTC Down Syndrome AG @tcdsag
476 Followers 100 Following We provide support to families and enhance the lives of persons with Down syndrome to reach their fullest potential and create a public awareness.Utah Down Syndrome @udsfcares
804 Followers 21 Following A non-profit organization established in 1977, the UTAH DOWN SYNDROME FOUNDATION provides resources for children with Down Syndrome and their families.SK Down Syndrome Soc @SDSS21
1K Followers 210 Following The SDSS provides support for parents, teachers, professionals & anyone who is living with and experiencing the joys & challenges of Down syndrome.Nancy McCrea Iannone @AMNMcI
146 Followers 413 Following RU law teacher, writer https://t.co/Wp1Dz1Z9dm, wife, mom — pronouns: she, herCarrie Haverty @carrie_haverty
1K Followers 1K Following keen on women’s health & delivering clinical products with meaning (counsyl, myriad, mirvie), cgc, mom, strategy nerd, sf & public school evangelist, she/herDown syndrome Naples @DownsyndromeNap
1K Followers 67 Following DSN: Empowering individuals with #Downsyndrome. Join us on our son's remarkable journey. Follow his nonprofit @Info4ANI & listen to his radio show #SharpeLivin'Boardwalk BuddyWalk @BoardwalkBW
141 Followers 37 FollowingUnderTheBigSkyBW @UBSbuddywalk
231 Followers 107 Following Under the Big Sky Buddy Walk® held annually in Great Falls MontanaAshleyDFoundation @Ashley_DeRamus
922 Followers 1K Following Down Syndrome Advocate – Young Ladies Apparel Ashley by design & Public SpeakerDown Syndrome Vic @DownSyndromeVic
2K Followers 339 Following Down Syndrome Victoria is a non-profit organisation that aims to empower individuals to achieve a lifetime of meaningful inclusion in the community.RGVDSA @RGVDSA
257 Followers 185 Following Our mission is to build relationships, advocacy and support for individuals with Down syndrome and their friends in the Rio Grande Valley.Middle GA DSS @MiddleGADSS
266 Followers 200 Following We are a group of parents seeking to support each other on this journey. We meet on the 3rd Tues. of every month at 6:30 on the porch at Mellow Mushroom, Macon.This is so important. I don’t think the genetic counseling profession has ever fully addressed the role we play in eugenics. Nondirectiveness is used as an out. But as speakers said, being neutral is making a choice. #genechat #nsgc22
Abortion is healthcare and a human right AND abortion is a tool of eugenics used to erase #disability culture from our society. We must create space for both of these truths in order to protect the right to access abortion & the right to live in non-ableist world! #NSGC22
Key example of ableism: assuming all presenters will be able to read key points of their presentation on a tiny screen away from the stage. Let’s provide a screen/tablet on the table in the future, shall we? #NSGC22 #GeneChat @GeneticCouns
Why did no one tell me how TIRED I would be at the end of day ONE of #NSGC22 ??
Tip from a local for #NSGC22 attendees… the street outside the conference center is pronounced Deh-MUN-bree-uhn not Demon-Brewin (which we agree is a real missed opportunity). Welcome to Nashville!!!
it’s officially a NSGC AC when a men’s restroom becomes a gender-neutral bathroom.
MPORTANT NEWS! @AmerAcadPeds just published the "2022 Health Supervision for Children and Adolescents with Down Syndrome." It’s the 1st update since 2011 & a family-friendly version is on the way! Download & take this resource to your pediatrician TODAY! bit.ly/2022AAPUpdate
@drjashton “Anyone can do a test - it is using the results of that test which require medical credentials and judgment and experience that matters. So women should talk to their midwife, their obstetrician about what to do with that test.
@drjashton: “It is recommended by ACOG to do early first trimester screening of this nature pregnancy” It is an overstatement to say that @acog recommends these tests. ACOG recommends they be offered but patients should always have a choice about whether to undergo/decline
In fact, for many of the conditions included on these screens a false positive is more likely than a true positive. nytimes.com/2022/01/01/ups…
@drjashton: “It is about 97-99% accurate” This statement is one of the reasons the FDA released this communication. Please know that the likelihood a prenatal cfDNA result that returns positive for a chromosome condition is a *TRUE* positive is almost always less than 99-97%.
@drjashton: “Usually they combine this test with an ultrasound looking at the fetus” The cfDNA/noninvasive prenatal screening does not involve info from ultrasound, however some tests that predated cfDNA screening did use ultrasound in combination with other blood markers
This is one of the reasons that the @US_FDA recommends “meeting with a genetic counselor or other health care provider before deciding to have prenatal testing.” Not all people elect to undergo prenatal screening tests.
@drjashton: "It's pretty standard in prenatal care in this country so over 4 million women per year get this test” Actually prenatal genetic screening tests should never be considered “standard” or “routine” and not all women elect to undergo these tests.
We are excited to announce three new cosponsors of H.R. 2144 #AccesstoGCs today! Thank you to @RepMullin, @RepGusBilirakis and @RepMaloney for supporting this important bill. #GeneChat
The ACMG Foundation & PerkinElmer work with their partners to sponsor the Day of Caring event. This Friday, we're donating specially-adapted bicycles and helmets to children living with genetic conditions. Join us at 10:45 AM in the exhibit hall. #ACMGMtg2022
Me trolling the booths in the exhibit hall, looking for swag for my kids. #ACMGMtg22
“I had taken the doctor’s word of what #Downsyndrome meant for our son. I was too grieved to look outside the small box he put our son’s life in. @LoveMattersMore @JillianBenfield lovewhatmatters.com/the-doctor-cal…
This couple may have had one of longest marriages of any pair with Down syndrome. And possibly one of the happiest. ow.ly/Gff530oBrbx via @washingtonpost
Want to boost the brain health of a loved one with #Downsyndrome? I've just launched a new online course called Down Syndrome Brain Train. First three videos for free at downsyndromebraintrain.com/new-cover-page