
Rare Disease Week: Washington, DC Round-up
Last week, Karly Werner, FAC Council Member, and Jennifer Panagoulias, head of regulatory and policy and co-director of ABOM, attended the annual Rare Disease Week
Last week, Karly Werner, FAC Council Member, and Jennifer Panagoulias, head of regulatory and policy and co-director of ABOM, attended the annual Rare Disease Week
International Angelman Day is an opportunity to connect with the global Angelman syndrome community, raise awareness, and celebrate the Moment of Hope that inspires us
An exciting publication in Science Translational Medicine titled “An ASO therapy for Angelman syndrome that targets an evolutionarily conserved region at the start of the
A huge congratulations to the Rett syndrome community for the recent approval of Trofinetide, a first-ever approved treatment for individuals living with Rett syndrome from
FAST’s Global Science Summit and Gala, which took place on December 2-3, 2022 in Miami, Florida, featured over 20 presentations from researchers, clinicians and pharmaceutical companies. FAST brought together community members from all over the world with dozens of research partners and pharmaceutical companies joining the Summit & Gala events. In addition, the Science Summit presentations were live-streamed in multiple languages with people tuning in from 29 different countries!
The hybrid event featured updates on the latest Angelman syndrome research and clinical trials from the top scientists and industry leaders, as well as helpful vendors that provided Angelman families with goods and services to support their loved ones living with Angelman syndrome. The Global Science Summit and Gala shared a unique look at FAST’s future-focused mission to find effective therapeutics for all individuals living with Angelman syndrome. To watch recorded presentations from the 2022 FAST Global Science Summit and Gala, please click here.
Thank you to everyone that participated in the event and contributed to raise a record amount of money to accelerate our mission. You can learn more about FAST online, sign up for our newsletter and contribute to our mission. We appreciate the continued support from our global community.
Fireside chats are conducted monthly by zoom, and will often feature special guests. All participants need to register in advance. We ask that participants refrain from recording or taking screenshots, or sharing publicly what is shared by other audience members. Notes are taken at each event, and are published on the FAST’s website the following week, as a record for those who could not attend. Thank you, and please join us!
Check out all of the events happening in the community. If you are hosting a fundraising event, submit the information below.
We are here to educate and discuss on an ongoing basis. Topics will be chosen by YOU! What do YOU want to know related to gene therapy, cell therapy, endpoints,
We are here to educate and discuss on an ongoing basis. Topics will be chosen by YOU! What do YOU want to know related to gene therapy, cell therapy, endpoints, biomarkers, the basics of clinical trials and what you feel you need to know? We will take topics at info@cureangelman.org and prepare an open dialogue and chats because we know that KNOWLEDGE IS POWER.
(Cap of 15 participants per session)
(Tuesday) 8:30 PM
06may10:00 AMSkating Angels Hockey TournamentAdult hockey tournament to benefit FAST
Skating Angels Hockey Tournament
Skating Angels Hockey Tournament
(Saturday) 10:00 AM
Boston, MA
03jun8:00 AMHarper’s Hope Golf Touranment10th Annual Harper’s Hope Golf Tournament
The Webb family is hosting their 10th Annual Harper’s Hope Golf Tournament in Yatesville in honor of their daughter, Harper.
The Webb family is hosting their 10th Annual Harper’s Hope Golf Tournament in Yatesville in honor of their daughter, Harper.
(Saturday) 8:00 AM
Yatesville, KY
25jun9:00 AMGo Go Gus Golf Touranment2nd Annual Go Gus Golf Golf tournament
The Laskowski family is hosting their 2nd Annual Go Gus Golf Golf tournament in honor of their son, Gus.
The Laskowski family is hosting their 2nd Annual Go Gus Golf Golf tournament in honor of their son, Gus.
(Sunday) 9:00 AM
Linwood, MI
13julAll DayLinks for Louie Golf Tournament5th Annual Links for Louie Golf tournament
The Werner family is hosting their 5th Annual Links for Louie Golf tournament in honor of their son, Louie.
The Werner family is hosting their 5th Annual Links for Louie Golf tournament in honor of their son, Louie.
All Day (Thursday)
Prior Lake, MN
15jul12:00 PMPayslie’s Pals Cornhole Tournament2nd Annual Payslie’s Pals Cornhole Tournament
The Berndt family is hosting their 2nd Annual Payslie’s Pals Cornhole Tournament in honor of their daughter, Payslie.
The Berndt family is hosting their 2nd Annual Payslie’s Pals Cornhole Tournament in honor of their daughter, Payslie.
(Saturday) 12:00 PM
Fall River, WI
Raffle baskets, silent auction items, and food/bake sale. Fun for all ages! Will have bounce house and a park for the kids to play at!
Raffle baskets, silent auction items, and food/bake sale. Fun for all ages! Will have bounce house and a park for the kids to play at!
(Saturday) 2:26 PM
Brayton Park
Fall River, WI
28julAll DayJames CAN Golf Outing2nd Annual James CAN Golf Outing
The Poerio family is hosting their 2nd Annual James CAN Golf Outing in honor of their son, James.
The Poerio family is hosting their 2nd Annual James CAN Golf Outing in honor of their son, James.
All Day (Friday)
Oak Ridge, NJ
29jul11:00 AMHendu’s Golf Classic6th Annual Hendu’s Golf Classic
The Henderson family is hosting their 6th Annual Hendu’s Golf Classic in honor of their son, Chase.
The Henderson family is hosting their 6th Annual Hendu’s Golf Classic in honor of their son, Chase.
(Saturday) 11:00 AM
Auburn, WA