Siera’s 35th Birthday Bash for IRSF
Date: Saturday, January 28th, 2023
Location: St. Louis Moose Lodge 1566, 811 Michigan Ave, St Louis MI 48880
Come help us celebrate Siera’s 35th birthday while raising funds for IRSF. Enjoy an evening of entertainment, dinner & cash bar, live & silent auction and more! All ages welcome.
To RSVP, please contact Lisa Rushin at: 989-285-5994.
Unable to join but want to donate- you may do so here: https://rettgrassrootevents.funraise.org/fundraiser/lisa-rushin
All proceeds to benefit IRSF.
Date: Saturday, February 25, 2023
Time: 6:30pm to 10:30pm PT
Location: The Mill Casino (3201 Tremont Ave, North Bend, OR 97459)
Join us for the 1st annual Roses for Rett, a night of dancing and music with light appetizers, a hosted wine and cash bar as well as a silent auction. All proceeds to benefit IRSF in honor of their daughter, Sabre Rose.
“Sabra Rose was born into this world much the same as all little girls – her wiggles and smiles stole our hearts. However, when she was 2.5, we noticed a major regression and loss of skills. Shortly after that we received a diagnosis of Rett syndrome for Sabra. Our lives have been turned upside down but we have HOPE and research is promising. Thank you for your support to give us a ray of hope for our Sabra Rose!”
Please direct any questions to Rachel Hampton at [email protected]
Date: Saturday, April 22, 2023
Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run
Location: Due to circumstances beyond our control, we are moving the Run For Rett to Busse Woods North, Grove #28. It is the same location used in prior years. Enter Busse Woods 1 block east of Route 53 on Golf Rd. All other details remain the same.
From the serious runner to the recreational runner to family members and friends of all ages, the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run.
*First 200 participants receive an official Run For Rett t-shirt*
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.
Date: Friday, April 28, 2023
Time: 12 p.m. Registration | 1:00 p.m. Event Start
Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304)
It’s that time again! Let’s break some clays and go ALL IN to create a world without Rett! Gather your friends and family for an incredible day of tournament skeet shooting, live music, raffles, crawfish boil, and tons of fun to support this very special cause.
Date: Saturday, April 29, 2023
Time: 8 a.m. – 4:30 p.m. CT
Location: River Park Plaza (10 River Park Plaza Saint Paul, MN 55107)
After a two-year break, WE ARE BACK and ready to share some exciting updates on drug trials and gene therapy!
- The Midwest Rett Syndrome Foundation (MRSF) welcomes families and caregivers for a day of learning and networking. We have real treatments coming to help our children!
- This full day of adult conversation will focus on research updates and local opportunities to get the most out of our Center of Excellence at Gillette Children’s.
- There will be information tables, giveaways and special introductions throughout the day!
Date: Saturday, April 29, 2023
Time: 5-10 p.m. CT
Location: The Farehouse Market (600 W Chicago Ave, Chicago, IL 60654)
We’re excited to be back at The Farehouse Market for a night of food & drink, a live and silent auction, and the chance to help us celebrate Cammy’s 14th Birthday!
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.
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 Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials. During the trials, these families gained insight into the side effects of this treatment and saw first-hand the potential benefits for their loved ones with Rett.
Join IRSF for a candid Q&A with parents whose daughters participated in different stages of the trofinetide clinical trials. During this 1-hour live webinar, they’ll share their experience with the treatment, covering topics including how they managed side effects, what changes they saw in their daughters, and what they would share with any parent considering DAYBUE for their child.
Our Parent Panelists:
- Silvia Baker, parent to Olivia, age 17
- Patty Mevis, parent to Kira, age 16
- Erica Waggenspack, parent to Kerrigan, age 5
The panel will be moderated by Paige Nues, IRSF Family Empowerment Director, and include questions submitted by our community.
Medical Disclaimer: All information, content, and material presented in this webinar is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding your specific medical condition.