Podcasts about aparito

#S10e96 - https://www.youtube.com/watch?v=MkCKK4Z7J2I   Rochester - Check.  I asked in #S10e132 to do this and you stepped up, thank you.  We hit 200!   Aparito time Fill this in: https://forms.gle/4EsW3wu8BG4TQrD7A    The intersection of biomarkers and repurposing: The latter could help us figure out which of the former to focus on which could be the difference between a drug making it.   Repurposing:  Friend message - “And I wanted to tell you about the worsening behavior with treatments: a friend of mine has a son with Dravet syndrome, and many years ago they started him on a drug that reduced the seizures quite a bit, and my friend used to say “with this new treatment cleaning his brain from all those EEG interferences, we are starting to see more of his personality… and we've realized that we don't like him”. Very harsh but very real to say”   Morning Video SM vs ASO vs AAV https://www.youtube.com/watch?v=-xp3kTsBz38   List of repurposed drugs: Ravicti® (glycerol phenylbutyrate) - https://www.youtube.com/watch?v=Rwwdifsu1g8 Butyrate - https://www.youtube.com/watch?v=hjl9Z5_uQws NAL - https://www.youtube.com/watch?v=TphYC3o2BJQ  Pamelor® (nortriptyline) - https://www.youtube.com/watch?v=z0BdjDaWiMs  Fycompa® (perampanel) - Need to have a webinar on this.   Fycompa ® story from middle market country, Fycompa + Depakine + Risperadone.  Wow.   Ethics. Is it ethical to sit back and let our kids suffer?   Thank you to Virginie who is helping with EEG grant and volunteers, we have her back from ciitizen!  Thank you to those working on CZI grant too!   Congratulations to Encarnation and the SYNGAP1 European Team for this coverage https://english.elpais.com/health/2024-02-12/unraveling-the-mystery-of-celias-inexplicable-disease.html   Ed said: Syngap1Stories Episode 26 guest Paulina Polanco - released 2/13. Includes her Family Day talk in Orlando. Syngap.Fund/Stories Cafe Syngap1 Episode 11 guest Claudio Diaz - released 2/17 Syngap.Fund/Cafe Get Ready for Sprint - save the date 4/27/24 - sign up your teams now; Rifton is giving away another adaptive tricycle to a team who raises >$500 - Syngap.Fund/Sprint24  https://www.rifton.com/  (9 teams signed up as of 2/23 - we had 28 teams in 2023;) Orlando Family Day VideosUploaded to YouTube (https://www.youtube.com/playlist?list=PLjpr3a14_ls3PKu4oB_aeU_tfyYLE6-jj)  Added to Paulina's blog recap of the day (https://curesyngap1.org/blog/syngap1-family-day-2023-a-beacon-of-hope/);  Videos include Science Day Recap as well as a separate video of Mike's recap on “Where are we now?”, a summary of how parents can prepare for what's coming in the next couple of years (https://youtu.be/-xp3kTsBz38?si=_qHKRsYz2uJDJR_F). SYNGAP1 Conference 2024 hosted by SRF - planning committee will start meeting soon; if interested in helping, contact stacey@curesyngap1.org #SyngapConf SYNGAP1 Sibling Shanaye, a High School senior, is using her platform as the 2023 Hodgeman County Miss Teen Pageant winner to spread the word about SYNGAP1, which affects her younger sister Addison.YouTube Video - https://youtu.be/4L32aPNMSeM?si=EqNEhROdzvfGZxEQ Addison's Warrior Story - https://curesyngap1.org/syngap-warriors/addison/ We teamed with Simons Searchlight for their annual Shine Your Searchlight Campaign - if you're not signed up with Simons yet, sign up now - https://www.simonssearchlight.org/ Sydney & Sandy in S. Africa for Rare-X Rare Disease Conference - https://x.com/sandysmith317/status/1757669120928047520?s=20 We're looking for state representatives and state advocates - fill out this form if you're interested - https://docs.google.com/forms/d/e/1FAIpQLSfPWiyvAPuKif-h2bbMBqUKVLMeOeK-ISehbM9PvnReXMRjZg/viewformState Representatives - provide a point of contact for SYNGAP1 families (especially newly diagnosed) in your state to assist with information about registries, studies, fundraising, and other resources State Advocates - help families in your state navigate difficult systems (education, healthcare, state services, legal, etc.)   Upcoming Rare Disease Day - join us in DC; two blog posts:Rare Disease Day 2024 - what is it and how can you help SYNGAP1? You Should Represent SYNGAP1 During Rare Disease Week on Capitol Hill #S10e96 - https://www.youtube.com/watch?v=MkCKK4Z7J2I   Fundraising Getting organized:MDBR 6/8 - link to 2023 blog https://curesyngap1.org/blog/mdbr-2023-everything-we-want-to-c-happening-for-syngap1-camaraderie-community-collaboration/  2nd annual Golf Tourn in Canada 6/8 CFTC early-mid Sept? Link to past events is here:  https://curesyngap1.org/events/fundraisers/cannonball-for-the-cure/  3rd annual Scramble 10/5 - link to past events is here:  https://curesyngap1.org/events/fundraisers/scramble-for-syngap-2023/  4th annual SRF Gala honoring Caren Leib 10/18 - link to past events is here:  https://curesyngap1.org/events/fundraisers/srf-gala-honoring-caren-leib/ 3rd SYNGAP1 Conference, hosted by SRF in LA - pre-register to receive updated info when it's ready https://Syngap.Fund/24Pre   Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 134 of #Syngap10 - Feb 24, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat

TWO Gene therapy INDs approved in the past week! JAG201 for SHANK3 https://pmsf.org/breaking-news-from-jaguar-gene-therapy/ ETX101 for SCN1A https://encoded.com/press-releases/encoded-therapeutics-announces-us-ind-clearance-and-australian-cta-approval-for-dravet-syndrome-gene-therapy-candidate-etx101/    Mike's Gene Therapy Cheat Sheet https://docs.google.com/spreadsheets/d/1jwH5piRH9gOmylz-pCNd_DFnpEHJ6EkFyoaMjidBk6c/edit?usp=sharing    TAKE THE ROCHESTER SURVEY https://redcap.link/NDDCaregiverSurvey    SPRINT FOR SYNGAP24 is on! https://Syngap.Fund/Sprint24   APARITO ANNOUNCEMENT LI - https://www.linkedin.com/feed/update/urn:li:share:7157828674245783552/ X - https://x.com/cureSYNGAP1/status/1751969751621046667 FB - https://www.facebook.com/cureSYNGAP1/posts/pfbid07mabzGJhcZZZkm3vUy9EkZutAtTL16y4gytED52Xyzjayp3ew62zEXiDA8aEsuYWl   This is the program: https://www.aparito.com/patient-group-programme/   RAVICTI GROUP https://www.facebook.com/groups/butyrate/   Give all three of our podcasts 5 stars everywhere.   https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917    This is a podcast subscribe! https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1/id1560389818 Episode 132 of #Syngap10 - February 6, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat

Lex Guest, Head of Marketing, aims to make trials more accessible, especially for rare disease patients, using technology. Their strategy involves white papers, conferences, and LinkedIn ads. The focus is on customer feedback, client relationships, and growth through inbound leads. Growth Marketers face three major challenges: boosting qualified leads, enhancing campaign ROI, and lowering customer acquisition costs—precisely why they're in the growth game in the first place. Discover the solution with Pathmonk Accelerate: +50% Sales Increase Automatically Increase Website & Blog Lead Generation AI-Powered Personalized Experiences based on real-time intent Cookieless Technology All Integrations Supported No Website Changes Required Ready to elevate your website conversion? Experience it firsthand with our interactive demo ➡️ https://demo.pathmonk.com/ #growthmarketing #personalization #CRO #marketingpodcast

We speak to Dr. Elin Haf Davies, CEO and founder of the technology company Apartito. We dive into the topic of designing trials with especially paediatric patients in mind. Elin shares with us her perspective on this topic from her background from healthcare, regulatory authorities, pharma and now also tech.  Elin takes us through the mindset change the industry has undergone from believing that clinical trials in children were unethical, to regulatory bodies requiring life science companies to conduct trials in children to increase treatment options for this population.  Finding ways to make clinical trials a positive experience for children requires that you think about how you design the administration of the drug - but also how you design the trial itself. Using endpoints that were designed for adults will leave you with inconclusive results in children. Designing endpoints that are age appropriate, disease specific, passive and pain free will make all the difference for your trial.  What is missing from the equation is the tools for making paediatric-friendly clinical trials. Developing tools that will work for children will likely benefit the adult population too - because you are forced to reduce complexity and think about ease of use.  Measuring endpoints in a passive fashion carries the promise to make clinical trials easier to participate in for both children and adults - with tools like analysis of video recordings and wearables. We also speak about how wearables and passive means of collecting data do not replace the human element of care - especially not in a paediatric setting. Guest: Elin Haf Davies: https://www.linkedin.com/in/elin-haf-davies-414b5211/Aparito: https://www.aparito.com/ Links:EMA on mandate to conduct paediatric trials: https://www.ema.europa.eu/en/documents/other/european-paediatric-initiative-history-paediatric-regulation_en.pdf  FDA draft guidance on paediatric trials: https://www.fda.gov/news-events/press-announcements/new-fda-draft-guidance-aims-protect-children-who-participate-clinical-trials 

Dr Elin Haf Davies is an endurance rower, whose 77-day voyage across the Atlantic was the first in a line of adventures that led to her becoming part of the first all-woman team to row across the Indian Ocean and later, completing a “hat-trick of oceans” by sailing the Pacific. Through these voyages, Elin has raised over £300,000 for causes close to her heart and has been recognised by the Welsh Assembly for “services to Wales”. But with ever the thirst for adventure, Elin has continued to make a difference after gaining her PhD and going onto a successful career as a scientific researcher and founder of healthcare innovation platform Aparito, which she still leads today. It's a long way from her early career, which began as a Premiership rugby prop forward for Alton and London Wasps, when she also competed for five years at international level for Wales A.  In this conversation with Michael, Elin discusses what has inspired her “squiggly career” and what comes next for someone who is always looking for the next great adventure.

Emily Kennedy is a social entrepreneur, Forbes 30 Under 30, Toyota Mother of Invention, one of Entrepreneur's Most Powerful Women, a keynote speaker, and podcaster, but the main reason I brought her on the podcast is because she's  working with some of the brightest minds to use AI to fight human trafficking.  It may surprise you to know that Emily does not have a background in AI or technology. In college, Emily focused her senior thesis on how to use big data to fight sex trafficking, which turned into a job, which then turned into her company and software, Traffic Jam, which has helped identify 6,800 victims in the last 2 years. I've long had an interest in understanding how we could tackle human trafficking so it was fantastic to be connected with Emily and learn about what she's doing. What we covered in this episode: How a trip to Eastern Europe sparked a commitment to tackling human trafficking, and how she created her business from her university project, which is now used as tool used by law enforcement agencies in the USA, Canada and UK How you don't need a tech background to work in and with technology like AI (artificial intelligence) Emily shares the key lessons she's learnt starting as an entrepreneur without any previous business experience Why Emily chooses not to measure her impact by the number of convictions, but measures victim identification not victim recovery, and she explains all  How to focus in on the impact you actually create even when you're trying to tackle a huge complex and global issue - Emily has some amazing advice to share on this! The fear of being a minority, proving people wrong, raising the bar of what people expect and building networks….taking opportunities to changing the status quo! How AI works to tackle human trafficking and deepening your knowledge of what's actually going on here where we live Why Emily welcomes criticisms (particularly from men leading in her field) Emily's links: Emily's website: https://www.emilykennedy.org/ The Empower Podcast Follow Emily on Instagram: @heyemilykennedy  If you enjoyed this episode you might also enjoy these past episodes: Our very first podcast with Dr Elin Haf Davies Founder of Aparito (technology in health) Interview with Bailie Aaron Founder of Spark Inside (coaching for young offenders) Interview with Ame Seji co-Founder of Niche Hair Lab (innovation in hair)  ___________________________________________________________________________Connect with KatInstagram: @katluckockcoaching Facebook: facebook.com/shareimpactpod Subscribe here to the podcast to receive weekly email updates of the latest episode: Join The Impact Entrepreneurs Club for free: https://www.facebook.com/groups/shareimpact Learn more about my Selling to Corporates as a Social Entrepreneur Course here: https://shareimpact.org/sell-to-corporates Struggling to achieve your income goals as a Social Entrepreneur?  Get the FREE 6 step blueprint and discover exactly how to achieve your monthly income goal every month and pay yourself what you're worth and truly desire.

At the start of the Covid-19 outbreak, NHSX (https://www.nhsx.nhs.uk/) , the AHSN Network (https://www.ahsnnetwork.com/) , PUBLIC (https://www.public.io/) and the Ministry for Housing, Communities and Local Government (https://www.gov.uk/government/organisations/ministry-of-housing-communities-and-local-government) launched #TechForce19 to find technology that could help vulnerable people during the pandemic. In this series of three podcasts, hear from the companies who were selected to receive nationwide support and funding to take their innovations to the next level. Episode 3 is the final episode in the TechForce series and features stories from Chanua (https://chanua.co.uk/) , PeopleToo (https://www.peopletoo.co.uk/) / Novoville (https://www.novoville.com/) , Alcuris (https://www.alcuris.co.uk/) , Birdie (https://birdie.care/) and Aparito (https://www.aparito.com/) .

Gall Cymru fod ar flaen y gad mewn datblygu suystemau digidol ym maes iechyd a gofal medd dau o arbenigwyr technoleg. Yn y podlediad hwn bydd Dr Elin Haf Davies, arloeswraig sy’n rhedeg ei chwmni Aparito yn Wrecsam a’r dylunydd Dyfan Searrell yn parhau gyda’u trafodaeth gyda’r cyflwynydd Dr Rhodri Griffiths ynglŷn â’r heriau a’r cyfleoedd sy’n wynebu datblygu technolegau a meddalwedd newydd er budd cleifion yng Nghymru.Gyda rhai o sustemau cyfrifiadurol y gwasanaeth iechyd yng Nghymru yn fwy na 20 mlwydd oed, yr her yn ôl Dr Elin Davies yw moderneiddio heb i’r sustemau presennol fethu. “Y broblem yw na allwch chi adeiladu palas os taw seiliau byngalo sydd yma.” Mae Dr Davies yn credu bod angen mwy o addysg ymhlith y cyhoedd i gael gwared ar y camddealltwriaeth ynglŷn â diogelwch data. “Er lles eich iechyd, er lles y gymuned, rhaid i bobl sylweddoli bod ni angen y data yma i wella ein gwasanaethau i roi'r gofal gorau.” Mae’r Cynulliad mewn sefyllfa arbennig o dda ychwanega hi, i fuddsoddi i wella’r sylfaen sydd ei angen i brosesi ddata o safon dda. “O roi rheolau ar gyfer ‘gatekeeping’ yn ei lle, y gallwn ni i gyd ennill o fuddsoddiad felly.”Yn ôl Dyfan Searrell, sy’n ddylunydd ac arloeswr yn y diwydiant technoleg gwybodaeth a gwasanaethau, mae gan Gymru gyfle gwych oherwydd ei maint i ddangos bod modd cyflwyno technoleg newydd a’i brofi cyn ei allforio i wledydd eraill. “Os na fyddwn ni’n ei wneud o, mi fydd cwmni mawr arall yn prynu’i ffordd i mewn i adeiladu’r sylfaen yna… ac mi fydd y cyfle wedi mynd,” meddai. Rhodri Griffiths o Hwb Gwyddorau Bywyd Cymru yw cyflwynydd Syniadau Iach.

Our guest this week is Elin Haf Davies, who is the CEO of Aparito - a technology company that focuses on patient-generated health data. Elin is also an inspirational speaker, trans-atlantic rower and pediatric nurse. In this episode we discuss clinical trials, the use of technology in patient-centric studies and the work of Aparito.

Our guest this week is Elin Haf Davies, who is the CEO of Aparito - a technology company that focuses on patient-generated health data. Elin is also an inspirational speaker, trans-atlantic rower and pediatric nurse. In this episode we discuss clinical trials, the use of technology in patient-centric studies and the work of Aparito.

Fe allech ddiystyru API fel jargon technoleg ond fe fyddem ni ar goll hebddynt. Os ydych chi erioed wedi archebu gwesty ar-lein, wedi archebu bwyd neu wedi gwneud eich siop archfarchnad wythnosol ar eich gliniadur, byddwch wedi defnyddio API (Rhyngwyneb Rhaglenni Cymhwysiad). Mae'n god sy'n caniatáu i wybodaeth gael ei throsglwyddo o un defnyddiwr i'r llall - a hebddo, byddai'r rhyngrwyd fel y gwyddom, yn ei chael hi'n anodd bodoli.Mae APIs eisoes yn cael eu defnyddio yn y GIG ond a ellid eu defnyddio'n fwy helaeth i helpu i drawsnewid y ffordd y mae gofal iechyd yn cael ei ddarparu? Yn y podlediad hwn bydd Dyfan Searell, sylfaenydd a Phrif Swyddog Gweithredol cwmni Elidir Health, sy’n creu rhaglenni cyfrifiadurol ar gyfer y maes iechyd a’r Dr. Elin Haf Davies, arloeswraig sy’n rhedeg ei chwmni Aparito, yn trafod sut y gall Cymru fod ar flaen y gad yn y maes hwn. Meddai Elin, “ Mae gennym ni gyfle anhygoel i fod yn flaengar…. mae angen i ni beidio bod yn ofnus ond yn fwy uchelgeisiol.” Mae Dyfan, sydd wedi bod yn gweithio gydag arloeswyr blaengar Bwrdd Iechyd Betsi Cadwaladr er mwyn datblygu sustem cofnodion cleifion ddi bapur, yn credu bod angen addysgu pawb am botensial y dechnoleg hon er mwyn datrys problemau gofal iechyd. “Mae’r gwasanaeth iechyd wedi dechrau yng Nghymru a nawr mae modd i’r gwasanaeth iechyd digidol hefyd gychwyn yng Nghymru- da ni o’r maint iawn a’r gennym ni’r modd i hynny ddigwydd.” Mae Elin yr un mor bositif. “Rwy’n teimlo’n gyffrous a hyderus bod gobaith mawr yma.” Rhodri Griffiths, aelod o Fwrdd Hwb Gwyddorau Bywyd Cymru yw cyflwynydd Syniadau Iach.

Mae Syniadau Iach yn trafod gweledigaeth Prif Weinidog Cymru, Mark Drakeford ynglŷn â’r ffordd y gall arloesedd wella’r byd iechyd a gofal yng Nghymru. Mae anghydraddoldebau iechyd yn broblem fawr yng Nghymru, medd Prif Weinidog Cymru Mark Drakeford AC ond mae ganddo weledigaeth am sut y gellid ddefnyddio arloesedd i wella’r sefyllfa. “Bydd arloesi’n cynnig nid yn unig ffordd i wella gofal iechyd ond bydd yn ein helpu ni ar y daith i sicrhau Cymru fwy cyfartal,” meddai.Yn y podlediad hwn bydd Siôn Charles, dirprwy gyfarwyddwr y Comisiwn Bevan a’r Dr. Elin Haf Davies, arloeswraig sy’n rhedeg ei chwmni Aparito, yn ymateb i’r weledigaeth hon. Mae Sion o’r farn bod yr un feddylfryd sydd ganddo ni wrth ddefnyddio ffôn i archebu tacsi yn “gallu helpu ni i baratoi gwasanaethau iechyd gwell yng Nghymru.” Treuliodd Elin lawer o'i hamser fel nyrs bediatrig yn gofalu am blant â chlefydau prin. Ar ôl teimlo bod y dulliau o fonitro’r cleifion yn aneffeithiol, fe wnaeth Elin feddwl am y syniad o fonitro cleifion o bell mewn amser real ac fe sefydlodd gwmni ei hun i wireddu’r syniad hwn.Ond nid technoleg yn unig all fod o help i gleifion Cymru. Meddai Elin, “ Y peth mwyaf innovative allwn ni wneud yw tynnu allan o’r sustem y practises sydd ddim yn gweithio bellach.” Rhodri Griffiths, aelod o Fwrdd Hwb Gwyddorau Bywyd Cymru yw cyflwynydd Syniadau Iach.

Dr Elin Haf Davies is both tenacious and personable. In this week’s podcast she shares her professional journey and her love of extreme physical adventures. Elin’s career began as a paediatric nurse at Great Ormond Street hospital. After 20 years of clinical, research experience and gaining her PhD she founded Aparito.  The company provides a solution to the ever changing challenges of bringing innovative drugs to market by offering a patient-centric design of wearable long term monitoring devices. Aparito’s data collection is key to monitoring patients, allowing to feed into care plans and treatment pathways. Whilst their wearable devices enable the delivery of an effective and personalised treatment.

On today’s 22nd Century episode I spoke with Elin, from Aparito. Aparito use a combination of wearable technology and smartphone apps to help in the real-time collection of patient data to assist with disease monitoring outside of the hospital. We talk about the existing solutions to the problem, why Aparito is needed, what diseases they monitor, and the potential impact of the technology in changing peoples lives.

Dr Elin Haf Davies is the Founder and CEO of Aparito. She wants to build a better world by monitoring patients when they’re outside of the hospital using wearables and disease-specific mobile apps. Listen to Elin's story about the adventure and the challenge of founding and leading a start-up to build a better world.

An adventurer, a child health advocate, a former Female Welsh Rugby side member, a Phd researcher, and now a healthcare entrepreneur, Elin Haf Davies is truly a force of nature. Her health-tech start-up company Aparito was recently written about in a gushingly positive article by Forbes who asked, “Can Aparito's Wearable Tech Solve Big Pharma's Billion-Dollar Crisis”? We try to answer that question, and many more, in this Vital Health Podcast.

CEO & Founder of Aparito shares her journey to creating the wearable health technology company, tackling rare diseases amongst young people