SETBP1 Genetics: Bite-Sized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our 2nd “SETBP1 Genetics: Bite-sized Breakthrough”. –This time, we are looking back at a breakthrough article published in the European Journal of Human Genetics in 2021 by Nadieh Jansen, MS, located at Radboud University Medical Center […]
Join the SETBP1Strong Team in the 2024 Million Dollar Bike Ride! Registration is now OPEN! SETBP1 Society in partnership with Schinzel-Gideon Syndrome Foundation and the University of Pennsylvania Orphan Disease Center (UPenn ODC) invite you to participate in the Million Dollar Bike Ride. This annual giving festival brings together rare disease families, friends and supporters […]
📣📣SAVE THE DATE!! 📝📝 The location and dates for the 2024 SETBP1 Family & Research Conference have been set! The in-person international gathering will be October 11th-13th, 2024 in Austin, TX USA! Can’t wait to see our SETBP1 families and researchers gather together again under one roof to connect, share and learn! Learn more: bit.ly/setbp1-conference
Give Now & Make an Impact Join our GT25 campaign to help us reach our $25K goal this year! We aim to raise $25,000 on GivingTuesday (Tuesday, November 28th) for our onsite-research, research collaborations and gathering at our 2024 SETBP1 Family & Research Conference! How do we get to the 25K? By creating 25 Facebook […]
SETBP1Strong Team Rides in Philly!!! For the 5th year in a row, the SETBP1Strong Team participated in the Million Dollar Bike Ride in Philadelphia, PA on June 11th. Each year since 2020 unique challenges have impacted participation within the Million Dollar Bike Ride. For 2020 and 2021, the event was entirely virtual due to covid. […]
Registration is open for the 2023 Million Dollar Bike Ride (MDBR)!! We would love for you to join our SETBP1Strong team! You can ride in-person on Saturday, June 10th in Philadelphia, PA or you can ride virtually. Each year, SETBP1 friends and family ride to raise funds for SETBP1-HD and related disorder research in the […]
SETBP1 FAMILY IN-PERSON MEETUP Let’s get together in Dallas, TX for a SETBP1 family meetup. This is a great opportunity to visit with other SETBP1 parents and for our SETBP1 kiddos to play together. Where: Klyde Warren Park in Dallas, TX – (https://www.klydewarrenpark.org/). It is a 5.2 acre park with food trucks, play equipment, tables […]
For the 4th year in a row, our SETBP1Strong Team participated in the Million Dollar Bike Ride MDBR) in Philadelphia, PA in June of 2022. This annual event supports over 30 rare disease communities and is sponsored by the Penn Medicine Orphan Disease Center (ODC). Collectively, the 2022 event raised over $2.6 million for the […]
The international day of giving wrapped up with SETBP1 Society exceeding our goal of $25,000! Our SETBP1 community rallied together to raise $29,519! This was made possible by the 180 total donations, the 160 unique donors and the 11 individual Facebook Fundraisers. These funds will go towards the establishment of our first ever SETBP1 Multidisciplinary […]
SETBP1 Society plans to work with our SETBP1 medical specialists to establish the first ever SETBP1 Multidisciplinary Clinic. The clinic will provide SETBP1 families coordinated care services to develop cohesive treatment plans. This GivingTuesday, we need to raise $25,000 to help establish this clinic. Check out our progress so far!
