Events

Apr
24
Mon
Hannah’s Hope Golf Tournament
Apr 24 @ 7:00 am

**RESCHEDULED**

Date: Monday, April 24, 2023
Time: Registration 7:00 am ET; First flight tee off 8:30 am ET
Location: Hillcrest Golf & Country Club (4011 N Boston Ave, Lubbock, TX 79415)
Continental breakfast items available and lunch will be provided

We invite you to take part in the First Annual Hannah’s Hope Golf Tournament rescheduled for April 24, 2023 at Hillcrest Country Club. This tournament will benefit the International Rett Syndrome Foundation in honor of Hannah Hooks.

The inspiration behind our tournament is 10-year-old Hannah Hooks. Hannah lives in Lubbock and is in 5th grade at Lubbock-Cooper West Elementary. Hannah was born with a rare disease called Rett Syndrome. Rett syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of the child’s life. In April of 2022 IRSF hosted their National Science and Family Summit and presented an update on a treatment for Rett Syndrome. Rett Syndrome has been treated in mice and there are multiple clinical trials going on throughout the world to bring a cure to the males and females living with Rett. A treatment for Rett will also lead to breakthroughs in many other diseases and disorders. In order to continue research, organizations like International Rett Syndrome Foundation need funds to contribute to the many companies who are seeking a treatment.

INFORMATION & REGISTRATION

May
8
Mon
Mark Charamella Memorial Golf Outing & Dinner
May 8 @ 11:00 am

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 annual Mark Charamella Memorial Golf Outing & Dinner!

“This will be the 10th year of hosting the Mark Charamella Memorial Golf Outing & Dinner. I know that my Dad would be so proud of his family, friends, and colleagues who come from near and far to join us year after year to raise money for Rett syndrome. Each year, when we gather for a fun day on the golf course, I definitely feel his presence and know this is exactly what he would want us to be doing. Please join us for our 10th year and our goal of raising $35,000 in honor of a great man!”
– Deb McLaughlin, Event Chair, daughter to Mark and sister to Deirdre

By participating in this tournament, you can hit the links to create a world without Rett for Deirdre and for many others. 

INFORMATION & REGISTRATION

Jun
9
Fri
Rip it for Rett Golf Tournament
Jun 9 @ 7:00 am

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 is a blast (if we do say so ourselves), a great round of golf on a great course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun!

INFORMATION & REGISTRATION

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