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38 episodes with hope gala
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2 episodes with hope gala
2 episodes with hope gala
2 episodes with hope gala
2 episodes with hope gala
2 episodes with hope gala
St. Jude Evening of Hope Gala with proceeds going to the St. Jude Research Hospitals will be on May 3rd, 5:30pm at the Omni Hotel in OKC. (See flyer and link below for more information.) I learned so much from the show Saint Judes was originally established in 1962 by Danny Thomas and continues to be ran by his daughter Marlo Thomas, who still is on the board stay tuned to the fantastic show and the Saint Jude evening of Hope gala that you can get involved in through your corporation, your business your services or individually.ClaudiaMy name is Claudia Al-Botros and I am a healthcare administrator for Psychiatric Care Solutions. I am a dedicated mother, and wife as well as an advocate for St. Jude Children's Research Hospital. I currently serve on the St. Jude Committee in Oklahoma City, giving back and making a meaningful impact in the lives of children battling cancer. I am passionate about fundraising and advocacy, ensuring that St. Jude continues its mission of providing lifesaving treatment to children at no cost to their families.Calbotros@aol.com405-924-3231________________DanetteDanette Mondalek has over 27 years of experience in healthcare administration and is the Oklahoma Regional Director of Managed Care at SSM Health, focusing on payer contracting. She excels in strategic negotiations and team building, enhancing healthcare systems' efficiencies. Passionate about quality care for seniors and at-risk populations, she actively supports various community organizations and promotes accessible healthcare for all.dmondalek@hotmail.com405-250-0430
Guest: Daria MonroeMinistry: Women's Hope Medical Clinic & Hope Adoptions (Auburn, AL)Position: Chief Executive OfficerTopic: Living Hope Gala on April 10, 2025Websites: partnerwith.net/hope, womenshope.org
Bill and Stacie Hooks have always believed in the importance of giving back as a way to show gratitude for the blessings in their lives. As the owners of Slim Chickens restaurants in Lincoln, they have been dedicated supporters of Catholic Social Services of Southern Nebraska for years. This year, their generosity continues as they proudly serve as the silent auction sponsor (https://events.handbid.com/lp/celebration-of-hope-auction) for the Celebration of Hope Gala & Silent Auction on March 15. Tune in to hear their inspiring story and the impact they're making in the community!
At this year's 38th Annual Celebration of Hope Gala, we are privileged to honor a true example of servant leadership. Mike Hosek has been named the recipient of the CSS Heart of Christ Award, and in this podcast, you'll hear how his early experiences shaped his commitment to leadership and service. Discover how Mike has brought more Hope in the Good Life to those served through the CSS Food Market and Meal Services Program. His story is a powerful reminder that living out the Gospel doesn't require changing the whole world at once—it simply calls us to keep saying yes to the opportunities before us.
Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently. Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance. Heather has so much CF Mom wisdom. I am glad to call her a friend. In 2019 Heather became a member of the family advisory board at C.S.Motts Children's Hospital in Ann Arbor, and is a Parent Family Partner through the CFLN with the CF clinic at Motts for just over a year.Heather is also a mentor in The Bonnell Foundation's Hand in Hand mentoring program. Heather and her husband Christopher recently spoke at The Bonnell Foundation Night of Hope Gala. We were lucky to have them!Heather on FB: https://www.facebook.com/share/xkiJ9yoitqvTUEsV/?mibextid=LQQJ4dHeather on IG: https://www.instagram.com/heather61811/profilecard/?igsh=MWxwOTR5d3N0dHh1OQ== Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en
On tonight's show, ahead of National Nut Day (October 22nd), Sammi Haber Brondo, a registered dietitian and nutritionist, will be discussing the nutrient-filled benefits of nuts and interesting ways to incorporate them into your lifestyle. After that, we'll hear from Elaina Burt founder of Charlie's Chance as she is preparing for the 3rd Annual Wings of Hope Gala to support epilepsy awareness.
On this MADM, Elaina Burt is sharing about her epilepsy awareness effort called Charlie's Chance and the upcoming 3rd Annual Wings of Hope Gala taking place on November 16th. Sponsor: MarMac Real Estate www.marmac.us
@markasher32 talks to Jenny Lester Moffitt, of @USDAFoodSafety about Farm to School Month and we give away a $100 gift card to @TwinPeaksLodge then we tell you about a great event Night of Hope Gala and our crosstalk with @Mastering_Money #news #headline #food #farms #cancer #retire
If you care about your health and the health of those around you, you will want to find the time to listen to our life changing podcast with lawyer extraordinaire Jessica Rossman and dedicated Hope Biosciences Research Foundation CEO Donna Chang. I have shared that our daughter Bella has experienced medical challenges
@markasher32 talks to Sung Kim with the @FTC about identity scams, then we give away a $50 gift card to @pitajungle then we talk about Night of Hope Gala with Lorraine Tallman and @The_MortgageChk our crosstalk with @Mastering_Money #scams #identitytheft #news #money #food #cancer #retire
A Night of Hope Gala, presented by the dancers of The Element Dance Center, is this Saturday, August 24, at the Joan B. Kroc Theater in La Mesa. This event is dedicated to raising funds for Dancer Against Cancer. Last year they raised over $52,000 and this year they are trying to double it! This morning we had dancer Mallory and her mom Nicole in to tell us a little about the event and why it is so important to them.
Grateful to catch up with John Driskell Hopkins (Hop) again to see how he's doing with his ALS diagnosis. About 2.5 years after being told he had ALS, John continues to perform with the Zac Brown Band. Despite seeing some progression of the disease, Hop is living a full and joyful life. He's busy creating new music, being a family man and promoting Hop On A Cure, the foundation he & his wife, Jennifer started to accelerate ALS research. Hop shares how ALS is affecting him & what it's like living out this journey in the public eye. He updates us on his family, his music projects & how we all can join his efforts to find ALS cures. Hop gives a sneak peek of their upcoming Harmony for Hope Gala in Atlanta, Georgia on September 14, 2024 - which will be a one of a kind evening with performances by Hop, Zac Brown, Clay Cook, Coy Bowles, Danny De Los Reyes, Kristian Bush, Lily Costner and other special guests. Listen in to our conversation & share with a friend. Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.
SAFE Place CEO Ellen Lassiter Collier returns to Community Matters for an update on the organization's mission - and their fundraising event.The Restoring Hope Gala is a dinner and auction set for May 17, 2024 and gives a significant boost to the organization's efforts to "provide safety to, empower and advocate for victims of domestic violence and sex trafficking and their families."Lassiter Collier discusses the focus of the event, which includes the name change for its 17th year.Episode ResourcesSAFE Place websiteGala InformationPurchase TicketsSee and Bid on Auction ItemsABOUT COMMUNITY MATTERSFormer WBCK Morning Show host Richard Piet (2014-2017) returns to host Community Matters, an interview program focused on community leaders and newsmakers in and around Battle Creek. Community Matters is heard Saturdays at 8:00 AM and PM Eastern on WBCK-FM (95.3) and anytime at battlecreekpodcast.com.Community Matters is sponsored by Lakeview Ford Lincoln and produced by Livemic Communications.
Is age a factor anymore with what some of our celebrities are pulling off? Plus, Chloe wanted to stylize Slater's hair in time for the Runway to Hope Gala. We also, have a panic button about a family that doesn't want Dad
When you think of the state of Planet Earth, do you feel optimism or dread? We couldn't blame you for having a bit of a pit in your stomach, considering everything we see in the news. We humans are tough on our home planet. Is it possible to reverse the negative impacts we create, and preserve a healthy future for generations to come? In this special Earth Day episode of Real Talk, we hear about amazing research being done in Alberta that could address our plastic problem in particular (56:45), but also oil spills and other environmental catastrophes. 2:50 | But first...federal Jobs Minister Randy Boissonnault joins Ryan in studio ahead of his address to the Edmonton Chamber of Commerce. We talk about the Canadian Hydrogen Convention, carbon capture, and Alberta Premier Danielle Smith telling Ottawa to stay in its lane re: federal funding for housing, healthcare, and research. Plus, Ryan asks Randy about the rumour a car's been parked outside his house for the past week with "Axe the Tax" signs. 25:45 | Charles Adler tells us what he thinks the cops need to do about the protestor parked outside Minister Boissonnault's house. We talk about a protest outside Parliament over the weekend, where demonstrators chanted "October 7th, we're almost free...long live October 7th!" 56:45 | It's Earth Day! What're we going to do about our plastic problem? Microplastics are being discovered on Mount Everest, the deepest depths of the ocean, and in placentas. Athabasca University researcher Dr. Srijak Bhatnagar tells us how microbes could be a big part of the solution, and not just for plastic waste. LEARN MORE: https://www.athabascau.ca/news/research/microbes-environment REAL TALK WORLD WATER DAY ROUND TABLE: rtrj.info/032124Water 1:42:20 | Our hearts are full after the Evening of Hope Gala. Ryan gives a special shout out to Real Talker AJ and everybody who's signed their organ donor card in this week's Positive Reflections presented by Kuby Renewable Energy. GET A FREE SOLAR QUOTE TODAY: https://kubyenergy.ca/ SEND US YOUR POSITIVE REFLECTION: talk@ryanjespersen.com FOLLOW US ON TIKTOK, TWITTER, & INSTAGRAM: @realtalkrj REAL TALK MERCH: https://ryanjespersen.com/merch BECOME A REAL TALK PATRON: https://www.patreon.com/ryanjespersen THANK YOU FOR SUPPORTING OUR SPONSORS! https://ryanjespersen.com/sponsors The views and opinions expressed in this show are those of the host and guests and do not necessarily reflect the position of Relay Communications Group Inc. or any affiliates.
Guest: Daria MonroeOrganization: Women's Hope Medical Clinic & Hope AdoptionsLocation: AuburnPosition: Executive Director & CEOTopic: Illuminating Hope Gala on April 23, 2024Website: womenshope.orgFaith Radio Community Calendar link
Guest: Daria MonroeOrganization: Women's Hope Medical Clinic & Hope AdoptionsLocation: AuburnPosition: Executive Director & CEOTopic: Illuminating Hope Gala on April 23, 2024Website: womenshope.orgFaith Radio Community Calendar link
"Many of the beliefs we form as children [about the world and ourSELVEs] we carry on into our adulthood, and they manifest in different ways, and they can really influence where we're gonna end up... The earlier we can help our kids gain an emotional IQ, the better off we will ALL be." In this episode we're joined by Sondra Vasquez, the Program Manager for Compass Health's Child and Family Clinic in Smokey Point, Washington. With over more than a decade as a therapist and clinical social worker, Sondra's on a mission to deliver better behavioral healthcare services to youth and their families, fostering better mental health in our communities. Presented by c89.5 in partnership with Seattle Children's, Coping 101 is an ongoing series led by students in Nathan Hale High School's Podcast Club that destigmatizes mental health from a teen's perspective, made possible with local support from 4Culture, Hansmire Builders, and Compass Health - NW Washington's Behavioral Healthcare leader. No matter our age or background we all face challenges, and there are healthy ways to cope. Get started with more episodes, and find community-centric resources online at c895.org/coping101 Kids' Mental Health Resources in WA State: https://kidsmentalhealthwa.org/youth-mental-health-resources/ Deconstructing the Mental Health System: https://dmhsus.org/ NAMI: https://www.nami.org/Home SAHMSA: https://www.samhsa.gov/find-help Child and Family Outpatient Services: what to expect, locations where this is offered, etc. Building Communities of Hope Gala for those who want to support services to children, youth, and family services in Western Washington including therapy, camps, and more intensive care.
See omnystudio.com/listener for privacy information.
A recent cyber attack on MGM Resorts International has created issues for people making reservations, checking in, gambling and more. Plus, Grammy nominated artist, Aloe Blacc takes some time with us on the phone! We chat about his upcoming performance at the UMC Foundation's Evening of Hope Gala at Paris Las Vegas. We also chat about what he loves to do in Las Vegas, his new music, and more. He's ready to raise a lot of money. Tickets are still available for the gala on October 13th. Tony Award-winner Idina Menzel will be performing too! Plus, we chat with Lady Gaga's talented band leader, Brian Newman. He has a late night show at Nomad Library called "Brian Newman After Dark." This show is really cool! Newman talks about working with Gaga and the unforgettable charm of the Vegas crowd. He's bringing the old Entertainment vibe back to the strip and we're here for it! David Blaine announces a new show and location and George Strait is coming back to Las Vegas. Plus, details on what happened to the now postponed Ed Sheeran concert at Allegiant Stadium. We also have weekend brunch at two strip restaurants... Casa Playa at Wynn Las Vegas and Flanker Kitchen + Sports Bar at Mandalay Bay. We also have information about Wolfgang Puck's new restaurant, coming soon.HOTWORX has so many benefits! The sauna combines heat, infrared, and exercise. More workout, less time. Tell them the VEGAS REVEALED PODCAST sent you & they will waive the $99 sign up fee! Locations: JONES & RUSSELL, BOCA PARK SUMMERLIN, HENDERSON BLACK MOUNTAIN, CENTENNIAL HILLS, DURANGO & SUNSET, W. TROPICANA & FT. APACHE, EASTERN & PEBBLE, SOUTHERN HIGHLANDS VegasNearMe App If it's fun to do or see, it's on VegasNearMe. The only app you'll need to navigate Las Vegas. Support the showFollow us on Instagram: @vegas.revealedFollow us on Twitter: @vegasrevealedFollow us on TikTok: @vegas.revealedWebsite: Vegas-Revealed.com
Lady Gaga's band leader has more shows coming up at the Nomad Library! Brian Newman After Dark is a throwback show where you never know who is going to show up! Newman's full interview will run in episode 186. We also bring you a candid chat with Grammy-nominated artist Aloe Blacc, who is gearing up to wow the audience at the UMC Foundation's Evening of Hope Gala. Support the showFollow us on Instagram: @vegas.revealedFollow us on Twitter: @vegasrevealedFollow us on TikTok: @vegas.revealedWebsite: Vegas-Revealed.com
If you want to meet Jerry in person, I encourage you to attend our Night of Hope Gala on September 9th. You'll be able to talk with Jerry about anything that is on your heart. You'll be so inspired, like I am every single time I see him or talk with him. If you're not able to attend, you'll still thoroughly enjoy this podcast as Jerry opens up about his long CF journey! Sixty-six years and counting! Jerry takes us through the “CF Dark Ages” as he calls it, to the present. What a journey.Jerry Cahill is with the Boomer Esiason Foundation. He is the Director of Team Boomer a CF advocate, public speaker, Founder of YOU CANNOT FAIL and pole vault coach.To attend the Night of Hope Celebration, Diamonds in the Sky buy tickets here or donate: https://thebonnellfoundation.org/night-of-hope-celebration/To follow Jerry: @jcahillYCFPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex: https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en
Beari Mears with PACC 911 joins the show to talk about funding for local pet rescues and the Glimmer of Hope Gala that raises money for the organization's critical care program. See omnystudio.com/listener for privacy information.
Lady Gaga's Jazz and Piano Residency show band leader, Brian Newman, is back for late night shows at the Nomad Library inside the Nomad Las Vegas, starting August 31st. The Durango Casino Resort is set to open this fall and is looking to fill over a thousand positions. We also have an update on Madonna's rescheduled Celebration Tour and Daryl Hall's upcoming performance at the Venetian Theater. Plus, Idina Menzel and Grammy nominee Aloe Black's involvement in the UMC Foundation's Evening of Hope Gala. Support the showFollow us on Instagram: @vegas.revealedFollow us on Twitter: @vegasrevealedFollow us on TikTok: @vegas.revealedWebsite: Vegas-Revealed.com
Local Spotlight
#UFDcure CANNONBALL2 is a wrap/half done. #S10e79 CANNONBALL! Donate now, it's matched: https://www.justgiving.com/fundraising/ufd-cftc-2022 Brett talking about CB2 https://www.youtube.com/watch?v=2Wb0RO74UIo UPenn interview https://www.youtube.com/watch?v=gFLEj_Uq1k8 Twitch: https://www.twitch.tv/ufdisciple Brett: https://twitter.com/UFDTech Peter: https://twitter.com/phalliburton Kevin: https://fryereeves.com/kevin-w-frye/ VISITS Pavel: https://twitter.com/SydneyStel/status/1584233335554854915/photo/2 Sydney: https://twitter.com/SydneyStel/status/1583079166014263296?s=20&t=YGu_OlFePZ5_jEhZvMj97g Rebecca: https://twitter.com/SydneyStel/status/1584233335554854915/photo/3 Virginie: https://twitter.com/McNamarVirginie/status/1583871153231183872?s=20&t=YGu_OlFePZ5_jEhZvMj97g Lauren: https://twitter.com/UFDTech/status/1584003603463045120?s=20&t=YGu_OlFePZ5_jEhZvMj97g RAREBASE https://www.rarebase.org/ AMAZING PRESS TV - CBS - NY https://www.cbsnews.com/newyork/news/dads-take-dares-for-donations-on-cross-country-road-trip-raising-money-for-syngap1-research/ FORBES https://www.forbes.com/sites/billroberson/2022/10/21/electric-cannonball-run-dads-drive-a-tesla-model-y-cross-country-to-fight-a-disease-affecting-their-sons/ FOX https://www.foxnews.com/us/dads-drive-across-country-expand-awareness-kids-rare-disease TONY https://threadreaderapp.com/thread/1582766217810493441.html UPCOMING EVENTS NOVEMBER IS GIVING SEASON! 3 Weeks: - November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap - November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient 6 Weeks: December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 79 of Syngap10 - October 23, 2022 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
CANNONBALL! Donate now, it's matched: https://www.justgiving.com/fundraising/ufd-cftc-2022 Brett talking about CB2 https://www.youtube.com/watch?v=2Wb0RO74UIo UPenn interview https://www.youtube.com/watch?v=gFLEj_Uq1k8 Twitch: https://www.twitch.tv/ufdisciple Brett: https://twitter.com/UFDTech Peter: https://twitter.com/phalliburton Kevin: https://fryereeves.com/kevin-w-frye/ VISITS Pavel: https://twitter.com/SydneyStel/status/1584233335554854915/photo/2 Sydney: https://twitter.com/SydneyStel/status/1583079166014263296?s=20&t=YGu_OlFePZ5_jEhZvMj97g Rebecca: https://twitter.com/SydneyStel/status/1584233335554854915/photo/3 Virginie: https://twitter.com/McNamarVirginie/status/1583871153231183872?s=20&t=YGu_OlFePZ5_jEhZvMj97g Lauren: https://twitter.com/UFDTech/status/1584003603463045120?s=20&t=YGu_OlFePZ5_jEhZvMj97g RAREBASE https://www.rarebase.org/ AMAZING PRESS TV - CBS - NY https://www.cbsnews.com/newyork/news/dads-take-dares-for-donations-on-cross-country-road-trip-raising-money-for-syngap1-research/ FORBES https://www.forbes.com/sites/billroberson/2022/10/21/electric-cannonball-run-dads-drive-a-tesla-model-y-cross-country-to-fight-a-disease-affecting-their-sons/ FOX https://www.foxnews.com/us/dads-drive-across-country-expand-awareness-kids-rare-disease TONY https://threadreaderapp.com/thread/1582766217810493441.html UPCOMING EVENTS NOVEMBER IS GIVING SEASON! 3 Weeks: - November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap - November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient 6 Weeks: December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 79 of Syngap10 - October 23, 2022 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
EVENT RECAPS October 8th -New Jersey - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - South Carolina - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap UPCOMING EVENTS 8 Days: - October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase NOVEMBER IS GIVING SEASON! 4 Weeks: - November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap - November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient 7 Weeks: December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 78 of Syngap10 - October 13, 2022 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
EVENT RECAPS October 8th -New Jersey - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - South Carolina - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap UPCOMING EVENTS 8 Days: - October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase NOVEMBER IS GIVING SEASON! 4 Weeks: - November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap - November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient 7 Weeks: December 1&2 in TN - SYNGAP1 CONFERENCE 2022: Charting our rare disease treatment path https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 78 of Syngap10 - October 13, 2022 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
INCREDIBLE MEETING, THANK YOU GC FOR THE HOSPITALITY! https://www.linkedin.com/feed/update/urn:li:activity:6982842796319657984 https://www.forbes.com/sites/greglicholai/2022/10/03/renaissance-in-precision-neuroscience-expected/?sh=61d48fa0c8a3 GRANT ALERT Coller mRNA Work at Hopkins https://www.eurekalert.org/news-releases/966873 COMPANY UPDATE Stoke Tx https://www.stoketherapeutics.com/ Praxis Medicine https://praxismedicines.com/ Rarebase https://www.rarebase.org/ Beacon Biosignals https://beacon.bio/ Jaxon Labs - 2 Mice in Progress. https://secure.givelively.org/donate/syngap-research-fund-incorporated/patient-derived-mice-models-at-jax Ionis - See Prosser Webinar! (Webinar 63) https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides https://www.syngapresearchfund.org/post/unite-to-bike-syngap-research-fund-rides-in-person-at-the-million-dollar-bike-ride Tevard https://tevard.com/ EVERY PATIENT MATTERS Census is now at 1,135 Patients. https://www.syngapresearchfund.org/post/123-syngapcensus-2022-update-37-in-q3-2022 https://twitter.com/cureSYNGAP1/status/1576246751974944768 GLOBAL FILE SRF Site is now in all Languages! Colombia/LatAmerica
INCREDIBLE MEETING, THANK YOU GC FOR THE HOSPITALITY! https://www.linkedin.com/feed/update/urn:li:activity:6982842796319657984 https://www.forbes.com/sites/greglicholai/2022/10/03/renaissance-in-precision-neuroscience-expected/?sh=61d48fa0c8a3 GRANT ALERT Coller mRNA Work at Hopkins https://www.eurekalert.org/news-releases/966873 COMPANY UPDATE Stoke Tx https://www.stoketherapeutics.com/ Praxis Medicine https://praxismedicines.com/ Rarebase https://www.rarebase.org/ Beacon Biosignals https://beacon.bio/ Jaxon Labs - 2 Mice in Progress. https://secure.givelively.org/donate/syngap-research-fund-incorporated/patient-derived-mice-models-at-jax Ionis - See Prosser Webinar! (Webinar 63) https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides https://www.syngapresearchfund.org/post/unite-to-bike-syngap-research-fund-rides-in-person-at-the-million-dollar-bike-ride Tevard https://tevard.com/ EVERY PATIENT MATTERS Census is now at 1,135 Patients. https://www.syngapresearchfund.org/post/123-syngapcensus-2022-update-37-in-q3-2022 https://twitter.com/cureSYNGAP1/status/1576246751974944768 GLOBAL FILE SRF Site is now in all Languages! Colombia/LatAmerica
EVERY PATIENT MATTERS Lots of work with doctors these days. e.g. Tony: DOI: 10.1159/000492706 https://www.karger.com/Article/FullText/492706 e.g. Jaxon: https://www.syngapresearchfund.org/post/syngap1-frequent-de-novo-missense-variant-alert-study-opportunity-for-p-gly344 WE ARE GLOBAL SRF Site is now in all Languages! Ukraine/Poland
EVERY PATIENT MATTERS Lots of work with doctors these days. e.g. Tony: DOI: 10.1159/000492706 https://www.karger.com/Article/FullText/492706 e.g. Jaxon: https://www.syngapresearchfund.org/post/syngap1-frequent-de-novo-missense-variant-alert-study-opportunity-for-p-gly344 WE ARE GLOBAL SRF Site is now in all Languages! Ukraine/Poland
GLOBAL GENES WAS GREAT Panel was impressive, will be sharing when recording is live, one point was small molecules… #GlobalGenes #CareAboutRare EVENTS ARE COMING 3 weeks! October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 8 weeks! November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 11 weeks! December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat RAREBASE Talked about this in #s10e27 https://youtu.be/r3bS9YepQ4s We are investing in small molecule repurposing as fast as we can. Four lines… Cannonball 2.0 is on! Checkout UFDtech on 21 October 2022! LINK#UFDtech #CannonballForTheCure #RareBase NOSPHARMA Talked about Bowie in #s10e69 https://www.youtube.com/watch?v=xl_r4hoDlf8 Nospharma leverages unique biological causes of brain disorders within the context of what is already known, to deliver effective treatments. By placing biology-first, we've created new drugs and repurposed on-the-market drugs to improve treatment success. We aim to deliver the most effective therapeutics for some of the most severe brain disorders, as quickly as possible. …from https://www.linkedin.com/company/nospharma/ #NOSpharma SIMONS/INVITAE PARTNERSHIP Two of the most important players in the Rare Epilepsy Ecosystem are partnering and it's great news for SYNGAP1 and SRF. https://www.prnewswire.com/news-releases/invitae-and-simons-searchlight-partner-to-accelerate-research-through-data-sharing-301621469.html Tweet: https://twitter.com/cureSYNGAP1/status/1569326298790789122 #SimonsFoundation #Autism #Invitae #ciitizen Satterstrom paper associates SYNGAP1 with Autism strongly https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7250485/ See figure 2B https://pubmed.ncbi.nlm.nih.gov/31981491/#&gid=article-figures&pid=figure-2-uid-1 AUTISM BRAIN NETWORK Webinar: https://www.syngapresearchfund.org/webinars/an-introduction-to-autism-brainnet Site: https://www.autismbrainnet.org/ etc. This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 75 of Syngap10 - September 18, 2022 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
GLOBAL GENES WAS GREAT Panel was impressive, will be sharing when recording is live, one point was small molecules… #GlobalGenes #CareAboutRare EVENTS ARE COMING 3 weeks! October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 8 weeks! November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 11 weeks! December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat RAREBASE Talked about this in #s10e27 https://youtu.be/r3bS9YepQ4s We are investing in small molecule repurposing as fast as we can. Four lines… Cannonball 2.0 is on! Checkout UFDtech on 21 October 2022! LINK#UFDtech #CannonballForTheCure #RareBase NOSPHARMA Talked about Bowie in #s10e69 https://www.youtube.com/watch?v=xl_r4hoDlf8 Nospharma leverages unique biological causes of brain disorders within the context of what is already known, to deliver effective treatments. By placing biology-first, we've created new drugs and repurposed on-the-market drugs to improve treatment success. We aim to deliver the most effective therapeutics for some of the most severe brain disorders, as quickly as possible. …from https://www.linkedin.com/company/nospharma/ #NOSpharma SIMONS/INVITAE PARTNERSHIP Two of the most important players in the Rare Epilepsy Ecosystem are partnering and it's great news for SYNGAP1 and SRF. https://www.prnewswire.com/news-releases/invitae-and-simons-searchlight-partner-to-accelerate-research-through-data-sharing-301621469.html Tweet: https://twitter.com/cureSYNGAP1/status/1569326298790789122 #SimonsFoundation #Autism #Invitae #ciitizen Satterstrom paper associates SYNGAP1 with Autism strongly https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7250485/ See figure 2B https://pubmed.ncbi.nlm.nih.gov/31981491/#&gid=article-figures&pid=figure-2-uid-1 AUTISM BRAIN NETWORK Webinar: https://www.syngapresearchfund.org/webinars/an-introduction-to-autism-brainnet Site: https://www.autismbrainnet.org/ etc. This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 75 of Syngap10 - September 18, 2022 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
0. SUPPORT OUR PATIENT IN UKRAINE Fundraiser: https://secure.givelively.org/donate/syngap-research-fund-incorporated/help-syngap-family-escape-ukraine/ Tweet: https://twitter.com/JMGraglia/status/1563362473327005698 1. LONGBOARD PHARMA & RAREBASE Watch #S10e71 https://www.youtube.com/watch?v=iPoOjKBwPfY 2. SEIZURE TRACKER Watch #S10e70 https://youtu.be/g6R9ejJnYbw More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 3. WEBINARS PRAXIS & INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 4. COME TO THE CONFERENCE Register: https://Syngap.Fund/Treat Book a room: Link on the registration page. 5. LOTS OF EVENTS TOO! 2 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 5 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 5 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 10 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 13 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 72 of #Syngap10 - August 27, 2022 #SalvaUkrani #helpneeded #Stoke #Acadia #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
0. SUPPORT OUR PATIENT IN UKRAINE Fundraiser: https://secure.givelively.org/donate/syngap-research-fund-incorporated/help-syngap-family-escape-ukraine/ Tweet: https://twitter.com/JMGraglia/status/1563362473327005698 1. LONGBOARD PHARMA & RAREBASE Watch #S10e71 https://www.youtube.com/watch?v=iPoOjKBwPfY 2. SEIZURE TRACKER Watch #S10e70 https://youtu.be/g6R9ejJnYbw More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 3. WEBINARS PRAXIS & INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 4. COME TO THE CONFERENCE Register: https://Syngap.Fund/Treat Book a room: Link on the registration page. 5. LOTS OF EVENTS TOO! 2 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 5 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 5 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 10 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 13 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 72 of #Syngap10 - August 27, 2022 #SalvaUkrani #helpneeded #Stoke #Acadia #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71 0. RAREBASE https://www.rarebase.org/ We announced a partnership at year ago, check out #S10e27 https://www.youtube.com/watch?v=r3bS9YepQ4s Now we are doing phase 2… stay tuned. 1. LONGBOARD PHARMA https://www.longboardpharma.com/ STUDY- https://pacific.researchstudytrial.com/ (Shared in #S10e65 - https://www.youtube.com/watch?v=hSK21-y8fQI) TALK - https://www.youtube.com/watch?v=s7l7wnrEX5E (Link shared in #S10e67 - https://www.youtube.com/watch?v=dVpl1UEBVXA) 2. SEIZURE TRACKER Watch #S10e70 https://youtu.be/g6R9ejJnYbw More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 3. WEBINARS PRAXIS INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 4. REGISTRIES: CIITIZEN, SIMONS, RARE-X CIITIZEN FIRST in US (MEDIAL RECORDS) Sign up at https://Ciitizen.com/SYNGAP1 Refresh by logging into https://app.ciitizen.com Profile update: https://intercom.help/ciitizen-corp/en/articles/6421786-ciitizen-profile-update SIMONS GLOBALLY (GC INTERVIEWS) Simons Searchlight participants can be from any country, as long as they speak English, Spanish, French or Dutch. Click Join Us on https://www.simonssearchlight.org/research/what-we-study/syngap1/ RARE-X (QUESTIONS) Sign up: https://syngap1.rare-x.org/ Webinar: https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program 5. COME TO THE CONFERENCE Register: https://Syngap.Fund/Treat Book a room: Link on the registration page. 6. COVID DEE SURVEY https://www.surveymonkey.com/r/DEEsCOVID19 7. LOTS OF OTHER EVENTS TOO! 3 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 6 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 6 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 11 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 14 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 71 of #Syngap10 - August 23, 2022 #PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
0. RAREBASE https://www.rarebase.org/ We announced a partnership at year ago, check out #S10e27 https://www.youtube.com/watch?v=r3bS9YepQ4s Now we are doing phase 2… stay tuned. 1. LONGBOARD PHARMA https://www.longboardpharma.com/ STUDY- https://pacific.researchstudytrial.com/ (Shared in #S10e65 - https://www.youtube.com/watch?v=hSK21-y8fQI) TALK - https://www.youtube.com/watch?v=s7l7wnrEX5E (Link shared in #S10e67 - https://www.youtube.com/watch?v=dVpl1UEBVXA) 2. SEIZURE TRACKER Watch #S10e70 https://youtu.be/g6R9ejJnYbw More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 3. WEBINARS PRAXIS INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 4. REGISTRIES: CIITIZEN, SIMONS, RARE-X CIITIZEN FIRST in US (MEDIAL RECORDS) Sign up at https://Ciitizen.com/SYNGAP1 Refresh by logging into https://app.ciitizen.com Profile update: https://intercom.help/ciitizen-corp/en/articles/6421786-ciitizen-profile-update SIMONS GLOBALLY (GC INTERVIEWS) Simons Searchlight participants can be from any country, as long as they speak English, Spanish, French or Dutch. Click Join Us on https://www.simonssearchlight.org/research/what-we-study/syngap1/ RARE-X (QUESTIONS) Sign up: https://syngap1.rare-x.org/ Webinar: https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program 5. COME TO THE CONFERENCE Register: https://Syngap.Fund/Treat Book a room: Link on the registration page. 6.COVID DEE SURVEY https://www.surveymonkey.com/r/DEEsCOVID19 7. LOTS OF OTHER EVENTS TOO! 3 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 6 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 6 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 11 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 14 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 71 of #Syngap10 - August 23, 2022 #PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
REFRESH RECORDS COLLECTION Go to your providers and see what records were collected and when, if you have been back since then, ask them to recollect. SIGN UP FOR TRACKER SURVEY If you are signed up for ciitizen, you have an email from “Invitae Research Studies - research-studies@invitae.com” The subject is “Invitation to participate in Invitae's Ciitizen rare neurological disorders research study” DO IT EVERY DAY FOR 30 DAYS WATCH THE WEBINAR (Number: 64) FB: https://www.facebook.com/cureSYNGAP1/videos/5755953431123242/ YT: https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker/ IF YOU HAVEN'T ALREADY, SIGN UP FOR CIITIZEN www.ciitizen.com/syngap1 LEARN ABOUT PRAXIS: https://www.youtube.com/watch?v=Kh7O1bxXsSE KEY REMINDERS FUNDRAISERS BOWIE/ID in US syngap.fund/bowie BOWIE/ID in CANADA syngap.fund/overcome MICE: Help us Make 2! https://syngap.fund/2mice BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS 4 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 8 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 8 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 9 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ 13 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 13 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient 16 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 70 of #Syngap10 - August 12, 2022 #PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
REFRESH RECORDS COLLECTION Go to your providers and see what records were collected and when, if you have been back since then, ask them to recollect. SIGN UP FOR TRACKER SURVEY If you are signed up for ciitizen, you have an email from “Invitae Research Studies - research-studies@invitae.com” The subject is “Invitation to participate in Invitae's Ciitizen rare neurological disorders research study” DO IT EVERY DAY FOR 30 DAYS WATCH THE WEBINAR (Number: 64) FB: https://www.facebook.com/cureSYNGAP1/videos/5755953431123242/ YT: https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker/ IF YOU HAVEN'T ALREADY, SIGN UP FOR CIITIZEN www.ciitizen.com/syngap1 LEARN ABOUT PRAXIS: https://www.youtube.com/watch?v=Kh7O1bxXsSE KEY REMINDERS FUNDRAISERS BOWIE/ID in US syngap.fund/bowie BOWIE/ID in CANADA syngap.fund/overcome MICE: Help us Make 2! https://syngap.fund/2mice BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS 4 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 8 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala 8 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 9 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ 13 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 13 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient 16 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 70 of #Syngap10 - August 12, 2022 #PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
First grant: You can learn more about the Courtney grant in episode 66? #s10e66 https://www.youtube.com/watch?v=_eVw6Oc_V_Y (Like these and subscribe to our YouTube channel). Second grant: Here is the press release and social media on the Bowie grant. - Facebook: https://www.facebook.com/cureSYNGAP1/posts/356581543313514 - Twitter: https://twitter.com/curesyngap1/status/1552642957546700800 - LinkedIn: https://www.linkedin.com/feed/update/urn:li:activity:6958432905563955200 - Press Release: https://www.eurekalert.org/news-releases/960181 1. We have LOTS of requests for support, many are good. So you should join us in supporting this one. 2. This is exciting - Quality and Focused - We said yes. The Bowie Grant story. Excellent and committed to SYNGAP1. Can't help but like the guy. Key words from press release: Prof. Bowie believes that by correcting targets downstream of these synapses, a specific combination therapy can result in a common improvement of the ID phenotype. This grant will support his lab in investigating the efficacy of this therapy via SYNGAP1 mouse models…to test our idea of using a small molecule approach to target the molecular pathways giving rise to intellectual disability. I am excited to see what new insights this research will uncover. 3. Global Collaboration - Overcome and Campdraft/SRF-Australia Tax deductible Donations in TWO Countries for this grant: - US syngap.fund/bowie - CANADA syngap.fund/overcome 4. Reminder: Infrastructure is huge and it's here for you. Don't take for granted the work that is required to give you opportunities to fund. Diligence, Grants to leading researchers, Webpages, Tax receipts, funds flowing directly to well governed organizations. It's here for you, fund the work! FUNDRAISERS - BOWIE/ID in US syngap.fund/bowie - BOWIE/ID in CANADA syngap.fund/overcome - MICE: Help us Make 2! https://syngap.fund/2mice - BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS - 6 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ - 10 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/- fundraising/caren-leib-gala - 10 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap - 11 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ - 15 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree - 15 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient - 18 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 69 of #Syngap10 - July 29, 2022 #Bowie #McGill #IntellectualDisability #overcomesyngap1 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
First grant: You can learn more about the Courtney grant in episode 66? #s10e66 https://www.youtube.com/watch?v=_eVw6Oc_V_Y (Like these and subscribe to our YouTube channel). Second grant: Here is the press release and social media on the Bowie grant. - Facebook: https://www.facebook.com/cureSYNGAP1/posts/356581543313514 - Twitter: https://twitter.com/curesyngap1/status/1552642957546700800 - LinkedIn: https://www.linkedin.com/feed/update/urn:li:activity:6958432905563955200 - Press Release: https://www.eurekalert.org/news-releases/960181 1. We have LOTS of requests for support, many are good. So you should join us in supporting this one. 2. This is exciting - Quality and Focused - We said yes. The Bowie Grant story. Excellent and committed to SYNGAP1. Can't help but like the guy. Key words from press release: Prof. Bowie believes that by correcting targets downstream of these synapses, a specific combination therapy can result in a common improvement of the ID phenotype. This grant will support his lab in investigating the efficacy of this therapy via SYNGAP1 mouse models…to test our idea of using a small molecule approach to target the molecular pathways giving rise to intellectual disability. I am excited to see what new insights this research will uncover. 3. Global Collaboration - Overcome and Campdraft/SRF-Australia Tax deductible Donations in TWO Countries for this grant: - US syngap.fund/bowie - CANADA syngap.fund/overcome 4. Reminder: Infrastructure is huge and it's here for you. Don't take for granted the work that is required to give you opportunities to fund. Diligence, Grants to leading researchers, Webpages, Tax receipts, funds flowing directly to well governed organizations. It's here for you, fund the work! FUNDRAISERS - BOWIE/ID in US syngap.fund/bowie - BOWIE/ID in CANADA syngap.fund/overcome - MICE: Help us Make 2! https://syngap.fund/2mice - BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS - 6 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ - 10 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/- fundraising/caren-leib-gala - 10 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap - 11 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ - 15 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree - 15 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient - 18 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://syngap.fund/10a Episode 69 of #Syngap10 - July 29, 2022 #Bowie #McGill #IntellectualDisability #overcomesyngap1 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
This week was ripe with a promising future! #s10e68 Remember Episode 67? https://www.youtube.com/watch?v=dVpl1UEBVXA (Like these and subscribe to our YouTube channel). Monday - Invitae Announcement https://ir.invitae.com/news-and-events/press-releases/press-release-details/2022/Invitae-Announces-Strategic-Business-Realignment-to-Accelerate-Its-Path-to-Positive-Cash-Flow-and-Realize-Full-Potential-of-Industry-Leading-Genetics-Testing-Platform/default.aspx - Sign up for Ciitizen: https://syngap.fund/ciitizen - CMO email: “While the announcement focused primarily on our operations and product portfolio, I wanted to take this opportunity to reinforce that Invitae remains unwavering in its commitment to patients. Cultivating strong relationships with Patient Advocacy Groups remains central to our business and our patient-centric philosophy. We will continue to collaborate closely with our Patient Advocacy partners and communities to educate patients and their families on the value of genetic testing in diagnosing and potentially preventing disease. Together with you, we remain steadfast in empowering and supporting patients and highlighting the many opportunities where genetic testing may be beneficial. “ Pharmacogenetics in case you are curious: https://ir.invitae.com/news-and-events/press-releases/press-release-details/2022/Invitae-Launches-Expanded-Pharmacogenomics-Panel-and-Specialized-Mental-Health-Panel/default.aspx Tuesday - Prosser Pre-Print - Mapping PTBP splicing in human brain identifies targets for therapeutic splice switching including SYNGAP1 - “We find that PTBP2 binding to SYNGAP1 mRNA promotes alternative splicing and non-sense mediated decay. Antisense oligonucleotides that disrupt PTBP binding sites on SYNGAP1 redirect splicing and increase gene and protein expression.” - https://twitter.com/cureSYNGAP1/status/1549408144987652104?s=20&t=u5iAtpoucdyaiT06Vt77pg Wednesday - Sample collection at Stanford. - Planning for end of year, see below. Thursday - CHOP Update - https://www.helbiglab.io/ - https://www.youtube.com/watch?v=JVTnkQCtQNo Friday - Disease concept interview, Rarebase & Colombia - WCMC is looking to add to the pile of disease concept studies, which we VERY MUCH need. For the pile see Vlaskamp 2019, Jimenez-Gomez 2019, Smith-Hicks 2021, Wright 2022, Lyons-Warren 2022. - https://www.rarebase.org/ - Vicky is also building community in LatAm, there is a reunion this weekend! https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w FUNDRAISERS - MICE: Help us Make 2! https://syngap.fund/2mice - BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS - 7 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ - 10 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - 10 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap - 11 Weeks: October 12-15 in OH - Child Neurology Society - 15 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree - 16 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient - 18 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 68 of #Syngap10 - July 25, 2022 #Ciitizen #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
Remember Episode 67? https://www.youtube.com/watch?v=dVpl1UEBVXA (Like these and subscribe to our YouTube channel). Monday - Invitae Announcement https://ir.invitae.com/news-and-events/press-releases/press-release-details/2022/Invitae-Announces-Strategic-Business-Realignment-to-Accelerate-Its-Path-to-Positive-Cash-Flow-and-Realize-Full-Potential-of-Industry-Leading-Genetics-Testing-Platform/default.aspx - Sign up for Ciitizen: https://syngap.fund/ciitizen - CMO email: “While the announcement focused primarily on our operations and product portfolio, I wanted to take this opportunity to reinforce that Invitae remains unwavering in its commitment to patients. Cultivating strong relationships with Patient Advocacy Groups remains central to our business and our patient-centric philosophy. We will continue to collaborate closely with our Patient Advocacy partners and communities to educate patients and their families on the value of genetic testing in diagnosing and potentially preventing disease. Together with you, we remain steadfast in empowering and supporting patients and highlighting the many opportunities where genetic testing may be beneficial. “ Pharmacogenetics in case you are curious: https://ir.invitae.com/news-and-events/press-releases/press-release-details/2022/Invitae-Launches-Expanded-Pharmacogenomics-Panel-and-Specialized-Mental-Health-Panel/default.aspx Tuesday - Prosser Pre-Print - Mapping PTBP splicing in human brain identifies targets for therapeutic splice switching including SYNGAP1 - “We find that PTBP2 binding to SYNGAP1 mRNA promotes alternative splicing and non-sense mediated decay. Antisense oligonucleotides that disrupt PTBP binding sites on SYNGAP1 redirect splicing and increase gene and protein expression.” - https://twitter.com/cureSYNGAP1/status/1549408144987652104?s=20&t=u5iAtpoucdyaiT06Vt77pg Wednesday - Sample collection at Stanford. - Planning for end of year, see below. Thursday - CHOP Update - https://www.helbiglab.io/ - https://www.youtube.com/watch?v=JVTnkQCtQNo Friday - Disease concept interview, Rarebase & Colombia - WCMC is looking to add to the pile of disease concept studies, which we VERY MUCH need. For the pile see Vlaskamp 2019, Jimenez-Gomez 2019, Smith-Hicks 2021, Wright 2022, Lyons-Warren 2022. - https://www.rarebase.org/ - Vicky is also building community in LatAm, there is a reunion this weekend! https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w FUNDRAISERS - MICE: Help us Make 2! https://syngap.fund/2mice - BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS - 7 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ - 10 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - 10 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap - 11 Weeks: October 12-15 in OH - Child Neurology Society - 15 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree - 16 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient - 18 Weeks: December 1 & 2 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 68 of #Syngap10 - July 25, 2022 #Ciitizen #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
COMMUNITY Two blogs you must read: - Charlie https://syngap.fund/charlie - MDBR https://syngap.fund/unite Vicky is also building community in LatAm, there is a reunion this weekend! https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w LEARNING Community is big, think Genetic Epilepsies, Remember the Dravet meeting? Well now you can go too: https://dravetfoundation.org/events/dsf-conference/ - Stoke: https://www.youtube.com/watch?v=xHCYFDSwf-o - Longboard: https://www.youtube.com/watch?v=s7l7wnrEX5E - Epigenyx: https://www.youtube.com/watch?v=a-fBOr1W3Dw - Ingo: https://www.youtube.com/watch?v=JVTnkQCtQNo Check out this trial: https://pacific.researchstudytrial.com/?utm_source=other&utm_medium=Longboard&utm_campaign=patient_recruitment&r=16 FUNDRAISERS - MICE: Help us Make 2! https://syngap.fund/2mice - BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS - 8 Weeks: September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ - 11 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - 11 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap - 16 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree - 19 Weeks: December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 67 of #Syngap10 - July 18, 2022 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
COMMUNITY Two blogs you must read: - Charlie https://syngap.fund/charlie - MDBR https://syngap.fund/unite Vicky is also building community in LatAm, there is a reunion this weekend! https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w LEARNING Community is big, think Genetic Epilepsies, Remember the Dravet meeting? Well now you can go too: https://dravetfoundation.org/events/dsf-conference/ - Stoke: https://www.youtube.com/watch?v=xHCYFDSwf-o - Longboard: https://www.youtube.com/watch?v=s7l7wnrEX5E - Epigenyx: https://www.youtube.com/watch?v=a-fBOr1W3Dw - Ingo: https://www.youtube.com/watch?v=JVTnkQCtQNo Check out this trial: https://pacific.researchstudytrial.com/?utm_source=other&utm_medium=Longboard&utm_campaign=patient_recruitment&r=16 FUNDRAISERS - MICE: Help us Make 2! https://syngap.fund/2mice - BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers EVENTS - 8 Weeks: September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ - 11 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - 11 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap - 16 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree - 19 Weeks: December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 67 of #Syngap10 - July 18, 2022 #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
Missense Variants are Finally Getting Attention. Reclassification. Grants. #S10e66 #SyngapCensus for 2q22 is 1098! https://www.syngapresearchfund.org/post/syngapcensus-2022-update-43-in-q2-2022 Incidence and Prevalence Article https://www.syngapresearchfund.org/post/why-are-we-so-sure-that-syngap1-related-intellectual-disability-is-under-diagnosed GRANT TO COURTNEY LAB - Spread the word Twitter: https://twitter.com/JMGraglia/status/1544634675808722946 LinkedIn: https://www.linkedin.com/posts/curesyngap1_missense-collaboration-syngap1-activity-6950413553703030784-6VHG/ Facebook: https://www.facebook.com/cureSYNGAP1/posts/pfbid02JshtwTaK1eSPJ4kUy9Ga1ZrQGAyvk7DyrK1tPWk5UauYDx8mTY8ENeYCUfCnPwXEl Press Release: https://www.eurekalert.org/news-releases/957967 GENETICS Missense: https://www.genome.gov/genetics-glossary/Missense-Mutation Protein Truncating: Nonsense: https://www.genome.gov/genetics-glossary/Nonsense-Mutation Frameshift: https://www.genome.gov/genetics-glossary/Frameshift-Mutation FUNDRAISERS - MICE: Help us Make 2! https://syngap.fund/2mice EVENTS September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 66 of #Syngap10 - July 6, 2022 #CareAboutRare #Ciitizen #Ambry #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration --- Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message
#SyngapCensus for 2q22 is 1098! https://www.syngapresearchfund.org/post/syngapcensus-2022-update-43-in-q2-2022 Incidence and Prevalence Article https://www.syngapresearchfund.org/post/why-are-we-so-sure-that-syngap1-related-intellectual-disability-is-under-diagnosed GRANT TO COURTNEY LAB - Spread the word -Twitter: https://twitter.com/JMGraglia/status/1544634675808722946 -LinkedIn: https://www.linkedin.com/posts/curesyngap1_missense-collaboration-syngap1-activity-6950413553703030784-6VHG/ -Facebook: https://www.facebook.com/cureSYNGAP1/posts/pfbid02JshtwTaK1eSPJ4kUy9Ga1ZrQGAyvk7DyrK1tPWk5UauYDx8mTY8ENeYCUfCnPwXEl -Press Release: https://www.eurekalert.org/news-releases/957967 GENETICS Missense: https://www.genome.gov/genetics-glossary/Missense-Mutation Protein Truncating: - Nonsense: https://www.genome.gov/genetics-glossary/Nonsense-Mutation - Frameshift: https://www.genome.gov/genetics-glossary/Frameshift-Mutation FUNDRAISERS - MICE: Help us Make 2! https://syngap.fund/2mice EVENTS -September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ -October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala -October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap -November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree -December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 66 of #Syngap10 - July 6, 2022 #CareAboutRare #Ciitizen #Ambry #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
WEBINARS - Susan on Fundraising: https://syngap.fund/susan - Go to the CIITIZEN Webinar tomorrow (June 29th @ 11:30 ET) https://syngap.fund/virginie - Sign up! https://www.ciitizen.com/syngap1/ FUNDRAISERS - SHARE & SUPPORT by Thursday, all funds matched in June! https://www.facebook.com/donate/435907651714018/336149052023430/ - MICE: Help us Make 2! https://syngap.fund/2mice DRAVET WAS AMAZING - Mike's Tweet-threads about the event - Day 1 https://twitter.com/JMGraglia/status/1540061343813885952 - Day 2 https://twitter.com/JMGraglia/status/1540339186187788289 - Day 3 https://twitter.com/JMGraglia/status/1540709603406540803 - DSF https://dravetfoundation.org/ - Conference https://dravetfoundation.org/events/dsf-conference/ - Dr. Andrade / AGE - https://www.uhnresearch.ca/researcher/danielle-andrade - Dr. Perry & Dr. Papadelis at Cook Children's - Article about Perry/Cook https://www.checkupnewsroom.com/rare-disease-day-carter--many-patients-treated-cook-childrens-syngap-rare-disease-seizures/ - Dr. Perry on the Twitter: https://twitter.com/TheNotoriousEEG - Link with the Dr. Papadelis study: https://www.cookchildrens.org/services/neurosciences-research/funding/ - Longboard - https://www.longboardpharma.com/ - https://pacific.researchstudytrial.com/ - Epigenyx - https://www.epygenix.com/ - Baraban Lab https://barabanlab.ucsf.edu/ - Clemizole Tweet https://twitter.com/JMGraglia/status/1540712480975884288 EVENTS September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 65 of #Syngap10 - June 28, 2022 #CareAboutRare #CureDravet #DSFinDFW #Ciitizen #LongboardPharma #Epigenyx #CookChildrens #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
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