Live Parent Panel: My Trofinetide Clinical Trial Experience

Live Parent Panel: My Trofinetide Clinical Trial Experience

Thursday, May 4, 2023
When: May 11, 2023 @ 7:00 pm – 8:00 pm

Date: May 11, 2023 Time: 7-8 p.m. ET INFORMATION & REGISTRATION In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for … Read More

Physician Panel: Answering Your Questions About Trofinetide

Thursday, May 4, 2023
When: May 23, 2023 @ 1:00 pm – 2:00 pm

Date: Tuesday, May 23, 2023 Time: 1-2 p.m. ET INFORMATION & REGISTRATION In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment … Read More

Blue Bird Rett Camp

Friday, April 14, 2023
When: April 22, 2023 @ 9:00 am – 4:00 pm
Where: Camp Journey in the Woods, 5193 TX 36, Bellville, Texas 77418

Rip it for Rett Golf Tournament

Wednesday, February 8, 2023
When: June 9, 2023 @ 7:00 am
Where: Dunegrass Golf Club, 200 Old Dunes Way, Old Orchard Beach, ME 04064

Date: Friday, June 9th, 2023 Location: Dunegrass Golf Club (200 Old Dunes Way, Old Orchard Beach, ME 04064) Time: 7 a.m. Registration | 8 a.m. Scramble The Rip it for Rett, hockey themed golf tournament … Read More

Mark Charamella Memorial Golf Outing & Dinner

Wednesday, February 1, 2023
When: May 8, 2023 @ 11:00 am
Where: Westover Country Club, 401 S Schuylkill Ave, Norristown, PA 19403

Date: Monday, May 8, 2023 Time: Registration 11:00 am | Shotgun Start 12:15 pm | Tailgate & Dinner 5 pm Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403) Join us for the 10th … Read More

A FIRST FOR RETT: FDA approves Trofinetide for the treatment of Rett syndrome!
It’s Giving Tuesday - Go ALL IN for Rett!