Erin Coller @erincoller
Mom/rare disease advocate for CCDS/CTD • Director of Communications for @creatineinfo • San Diego, CA #creatineinfo #SLC6A8 Opinions are my own creatineinfo.org/super-bowl-sun… San Diego, CA Joined July 2008-
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LIVE: Session 2 will be starting in 15 minutes! Come prepared to hear from Dr. Nicola Longo with @UofUHealth and 6 more CCDS panelists: creatineinfo.org/el-pfdd #CreatineInfo #ACDadvocacy #CCDSPFDD
After finding out their son has a rare and currently untreatable genetic disorder, a Mondovi couple decided to raise awareness by hosting an event called "Walk for Strength." wqow.com/news/chippewa-…
@DLeonhardt In 2003 @CDCgov estimated average lifetime direct costs to family of an individual w/ intellectual disability to be $1,014,000: cdc.gov/mmwr/preview/m… - we have some more specific info from @CreatineInfo as well re: rare disease treatment
These researchers, supported by ACD fellowship awards, are making progress towards treatment for CTD via drug repurposing. Watch this discussion with Dr. Schlebach and Dr. Axerio-Cilies to learn why there is hope for those affected by CCDS youtube.com/watch?v=8Qq7pJ… #CreatineHeroes
ACD is moving research forward that will help children like Crosby. Crosby is 3 years old and has Creatine Transporter Deficiency (CTD). Help us raise $250k to drive creatine deficiency research in 2022! creatineinfo.org/holiday-heroes/ #HolidayHeroes2021 #CreatineHeroes #ACDresearch
#GivingTuesday is here! Children like Cadman need your help! Fund key CCDS research areas such as drug repurposing, gene therapy, and newborn screening for CTD. Your Giving Tuesday gift will contribute to these and other vital initiatives! creatineinfo.org/holiday-heroes/ #CreatineHeroes
This #GivingTuesday I'm raising money for @CreatineInfo to support research to find a treatment for #CTD, son’s #raredisease. Donate today and my family will match your donation, up to $15k: creatineinfo.org/cadman #CreatineHeroes #ACDresearch #CreatineInfo
Thank you, Carlie, for sharing your journey to a CTD diagnosis and your impressions of the 2021 CCDS Virtual Conference! Read her story now: creatineinfo.org/diagnosis-chan… #ACDadvocacy #CreatineInfo
Our son needs heroes! Join us in supporting @CreatineInfo #HolidayHeroes2021 campaign & support research that will lead to treatments and cures for Creatine Transporter Deficiency (CTD). Help us reach our goal of $250k by 2022 creatineinfo.org/cadman #CreatineHeroes #ACDresearch
We’re excited to announce that ACD has been awarded a $238,000 Eugene Washington Engagement Award by @PCORI. To learn more, read the news release here: bit.ly/3bSLmpE #CreatineInfo #ACDresearch #PatientEngagement #PCORI #precisionmedicine #coreoutcomes
Very relevant content for us @creatineinfo from @Passage_Bio at #GGSummit as we have early stage AAV gene therapy studies ongoing for #CCDS #CTD #creatineinfo
Learn about approaches and challenges in gene therapy treatment of neurologic diseases in the 10:30ET #GGSummit session with David Weinstein, MD, MMSc #careaboutrare @Passage_Bio #GeneTherapy #MedEd
"If it's in the genome, it's a druggable target" -- Fyodor Urnov, PhD, @igisci (#GGSummit keynote session w/ @RadyGenomics Charlotte Hobbs) #creatineinfo
Log on now to watch the #GGSummit Keynote session, On the Cusp of Cures - Potential, Pragmatism & Progress in Genomic Science - with Fyodor Urnov, PhD from @igisci and Charlotte Hobbs of @RadyGenomics @UrnovFyodor #careaboutrare #Genomics
Happy to be participating in #GGSummit representing @creatineinfo today! Great talk by Anne Bruns from @PTCBio on Taking Patient Engagement in Clinical Trials to a New Level.
This is some of the real exciting stuff to come out of these conferences #2021CCDSVirtualConference
One of the main purposes of #2021CCDSVirtualConference is to bring researchers together to collaborate. Dr. Steven Baker, @UofUHealth, & Dr. Andreas Schulze, @UofT are already talking in the chat re: potential collaborations based on the talks presented recently! #creatineinfo
Did you know the abstracts for all speakers at #2021CCDSVirtualConference are available online? Find them here, along with the agenda: creatineinfo.org/wp-content/upl… #creatineinfo
Day 2 of #2021CCDSVirtualConference is kicking off shortly at 8 am PT/17:00 CET! Session 1 is packed full with 5 speakers. See the schedule: creatineinfo.org/ccds-virtual-c… Registration is free and still open! #creatineinfo
So great getting insights and dialogue going with Dr. Steven Gray. Kind of a rock star in the #genetherapy world and we are so thankful to have had him join us at #2021CCDSvirtualconference #creatineinfo
Gene therapy for CCDS & CTD is challenging because they’re neurological conditions. Gray is the world leader in developing #genetherapy for neurological conditions. He’s sharing expertise w/ bringing other rare disease neurological conditions to clinical trials. #creatineinfo
In session 1 we heard about so much cool research and received 18 questions from the audience! Please keep all the great questions coming. #2021CCDSvirtualconference #creatineinfo
Session 2 of #2021CCDSVirtualConference will talk more about pre-clinical models of creatine deficiencies. We have speakers from Italy, the US, & Canada covering all 3 CCDS in mice models. And the potential for treatments w/ intranasal creatine administration or gene therapy.
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Celeste Graham @CelesteBGraham
4 Followers 21 Following Daughter, Wife, Mommy, Friend, Christian, Advocate, Ambassador for the Association for Creatine Deficiencies, Special Education Teacher...I wear many hats :)
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377 Followers 125 Following A NonProfit dedicated to the three major Creatine Deficiency Syndromes- AGAT, GAMT, and CTD
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