Events

Apr
29
Fri
2022 The Great Rett Shootout
Apr 29 @ 12:00 pm

APRIL 29, 2022

Blackwood Sporting Co., 11400 FM2854 Conroe, TX

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.

Title Sponsor: Johnson Supply/Armstrong Air

EVENT INFO

    • Friday, April 29th, 2022
    • 12:00pm registration / 1:00 tournament
    • Blackwood Sporting Co., 11400 FM2854 Rd, Conroe, TX 77304
    • Crawfish boil, beverages, live music, raffle, and awards ceremony following the shootout
    • Individual awards for 1st, 2nd, and 3rd place, and 1st Overall Team
    • Experienced and Novice shooters are welcome!
      • $900 per 4-man team
      • $250 per individual
      • Mulligan Package: 6 Shots for $30
      • Carts included, ammunition not included
Information & Registration
May
21
Sat
Cammy Can’s Cinderella Story – 10th (almost) Annual
May 21 @ 5:00 pm
Cammy's Golden birthday What: Cammy Can's Cinderella Story - 10th (almost) Annual When: May 21, 2022 5pm til 10pm Where: The Farehouse Market, 600 W Chicago Ave, Chicago, IL Why: To Fund a cure for Rett Syndrome! Information & Registration Make a Donation Follow CAMMY CAN on Facebook
Jul
26
Tue
RettEd | Transitioning into Adulthood, Part 1: Medical Transition
Jul 26 @ 1:00 pm – 2:00 pm

Date: July 26, 2022 Time: 1-2 p.m. Eastern Time The first in a 3-part series on topics pertaining to adulthood in Rett syndrome, this session will provide strategies and resources to empower and prepare you and your young adult for the transition from pediatric to adult medical care. Medical transition is not a one-size-fits-all process, and this workshop-style talk will empower your family to have the best, most family-centered transition of care possible. The session will include stories from other caregivers and individuals in the Rett community and further expand on topics and questions from the session at IRSF’s ASCEND 2022 Rett Syndrome National Summit. Speakers: Jessica Nickrand is a program manager at the Child Neurology Foundation (CNF). She supports CNF’s Transition of Care Program—its largest and most diverse program—which helps to support youth, families, and child neurology teams in the medical transition. Jessica holds a Ph.D. from the University of Minnesota and is passionate about developing programs that empower young adults and their caregivers to effect systems-level change.  Paige Nues is the Director of Family Empowerment for the International Rett Syndrome Foundation (IRSF). Since her daughter, Katie’s diagnosis of Rett syndrome in 2003, Paige has worked diligently to build bridges between patient families, clinicians, scientists, and industry, both at IRSF and as a parent founder of Katie’s Clinic for Rett and Related Disorders at UCSF Benioff Children’s Hospital. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Aug
1
Mon
RettEd | What Comes Next? The FDA Regulatory Process from NDA to FDA Decision and Beyond
Aug 1 @ 3:00 pm – 4:00 pm
Date: Monday, August 1st, 2022 Time: 3 p.m. EDT With the recent news about trofinetide’s new drug application (NDA) submitted to the FDA, we are entering a new space for Rett syndrome: FDA Review. While this is the first time for Rett, it won’t be the last, and our community has a lot of great questions: “What does submitting an NDA mean? What’s the next step? How much longer? When will we have an approved treatment? How will my loved one get access to this treatment?” To answer these questions and many more, IRSF is excited to bring back FDA expert, James Valentine, Esq., to join IRSF’s Chief Science Officer, Dr. Dominique Pichard for a live webinar. Join them as they review the FDA regulatory process, share what happens between a successful Phase 3 clinical trial and an FDA decision about a drug or therapeutic, and explain what could come next for trofinetide and the Rett community. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Aug
20
Sat
Fill Your Freezer for Rett @ Online
Aug 20 all-day
The Morrison Family is hosting a pig raffle in honor of their daughter, Savannah who has Rett syndrome. They are excited to host this unique fundraiser as a way to help overpower Rett. Tickets are now available for purchase and the drawing will be hosted on Saturday, August 20th. Two prizes available and one person can win both prizes. Tickets are 1 for $10 or 6 for $50. Each prize is for half of a processed pig. If you don’t want to purchase a ticket but still want to support the Morrison Family, you may make a donation below. *Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593
Sep
27
Tue
RettEd Webinar | Transitioning into Adulthood, Part 2: Lifecare Planning
Sep 27 @ 1:00 pm – 2:00 pm
Date: September 27, 2022 Time: 1-2 p.m. Eastern Time The second in our 3-part series on topics pertaining to adulthood in Rett, this online workshop focuses on preparing for life post-high school when school services and support conclude. Geared for parents, guardians, and family members of the older teen and adult with Rett syndrome, this session will cover:
  • Legal Planning: Special Needs Trusts, Letter/Memorandum of Intent, Guardianship
  • Financial Planning: How to fund a Special Needs Trust, ABLE accounts, and more
  • Benefit Planning: Finding and accessing federal benefits like SSI & SSDI, Medicaid, Waivers, etc.
  • Defining Your Replacement Team: What happens when you can no longer provide direct care alone?
Speaker: Kacy Seitz is a financial planner with a Northwestern Mutual practice that serves nearly 500 special needs families in 28 states. As a special needs parent to 12-year-old Hudsyn (a friend of Samantha Brant’s daughter, Macy!), Kacy is all-too-familiar with the common fears you may have in learning about the topic of long-term planning for your child. In fact, she opened her practice in 2013 because she had difficulty finding good, sound advice to help her develop a solid plan for her daughter. Now, Kacy has personally trained and mentored hundreds of other advisors on how to do this type of planning for their clients, focusing on helping special needs families with proper financial planning throughout their lifetimes. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Oct
8
Sat
Throw for a Cure Cornhole Tournament @ Riverwinds Community Center
Oct 8 @ 9:30 am
Date: Saturday, October 8th, 2022 Time: 9:30 am ET Location: Riverwinds Community Center (1000 Riverwinds Drive, West Deptford NJ 08086) Contact: Mandy Fordyce at [email protected] or 856-430-2047 Join the Fordyce Family & friends for the 2nd Annual Throw for a Cure Cornhole Tournament benefitting the International Rett Syndrome Foundation. Teams will throw for a cure in honor of Macie Fordyce. Hosted at the Riverwinds Community Center, participants will enjoy a cornhole competition, food trucks, vendors & a raffle. MORE INFORMATION
Oct
29
Sat
3rd Annual Rally for Rett @ South Carolina State House
Oct 29 @ 11:00 am
Date: Saturday, October 29, 2022 Time: 11:00 a.m. ET Location: SC State House (1100 Gervais St, Columbia, SC 29208) INFORMATION & REGISTRATION
Nov
12
Sat
3rd Annual Raise a Glass for Rett Gala @ Watch Virtually or at locations throughout the US
Nov 12 @ 8:00 pm – 9:00 pm
Date: Saturday, November 12th, 2022 Time: 8-9 p.m. ET Location: Virtual Livestream + In-Person Viewing Parties across the US Join us for the 3rd Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett and Kathryn & Luke Kissam! GET VIRTUAL TICKETS Grab your commemorative beer or wine glass and join us for an evening of stories from your Rett community, inspiring updates on science and research advancements, and the opportunity to support Rett families all over the world. This special event will be broadcast live from New York City and reach thousands across the globe. Over the past two years, our donors, sponsors, and viewers have raised more than $400,000 to empower families and accelerate research towards a cure. Go ALL IN! Get your ticket to watch from your living room or learn more about a viewing party near you! Got your tickets? Make sure to let us know you're coming on our Facebook Event Page to get up-to-date information and connect with other attendees! Download the event's ONLINE JOURNAL for more information on the program, special messages, and all the nominations submitted by the community for our superheroes for Rett! For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Jackie Ventura at [email protected].
Dec
6
Tue
RettEd Webinar | Transitioning into Adulthood, Part 3
Dec 6 @ 1:00 pm – 2:00 pm
Date: December 6, 2022 Time: 1-2 pm ET INFORMATION & REGISTRATION Quality of Life Options by Real-Life Families Every individual with Rett syndrome is unique and while our paths may be similar, no family’s Rett journey is the same. This is especially true as our children grow into adults; while they don’t outgrow their need for us, there is no one ideal or specific policy roadmap to help navigate our loved ones’ Rett journey into adulthood. But with proper planning, goals, and vision, we can ensure this journey leads to an enriched adulthood. In the 3rd talk in our 3-part series on navigating adulthood in Rett syndrome, join us for a candid conversation with families who have navigated this process to provide the best quality of care, constructing meaningful lives for their adult loved ones while caring for themselves too. Learn about what you need to change, what needs to be secured, and what creative living and life options are out there for your adult with Rett syndrome from families who have been through this before. The panel includes:
  • Paul and Janelle Jochim, parents to Jill (age 46)
  • Megan Ladenburger and Mom Shanna Sowers, sister and mom to Brittany (age 34)
  • Theresa Bartolotta, mom to Lisa (age 33)
  • Moderator: Paige Nues, IRSF Family Empowerment Director and mom to Katie (age 20)
  • Special Guest: Sheila Lullo, Special Projects Coordinator of Quality Outcomes at Clearbrook in Illinois, a provider of community-based residential options, day programs, and more to adult individuals with special needs.
Join us for the webinar as our panel shares their real-life experiences and the process they went through in choosing Day Programs, Self-Directed Programming, Residential Care, and more. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Dec
10
Sat
Hannah’s 11th Annual Art Show for IRSF
Dec 10 @ 2:00 pm

Hannah’s 11th Annual Art Show for IRSF

Date: Saturday, December 10th Time: 2pm-4pm ET Location: Four Corners Art Gallery 148 N Main St, Mooresville, NC 28115 Join Hannah Carpenter for her annual art show for IRSF. Hannah works tirelessly all year long with her art instructor to create beautiful pieces of art. They are transformed into calendars, notecards and print all for sale at her holiday show. Proceeds benefit IRSF. Please direct any questions to Trisha Carpenter (Hannah’s mom) at [email protected].
Jan
28
Sat
Siera’s 35th Birthday Bash for IRSF
Jan 28 @ 5:00 pm

Siera’s 35th Birthday Bash for IRSF

Date: Saturday, January 28th, 2023 Time: 5pm-11pm 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.
Apr
28
Fri
The Great Rett Shootout 2023 @ Blackwood Sporting Co.
Apr 28 @ 2:00 pm
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. INFORMATION & REGISTRATION
Jun
5
Mon
2023 IRSF Rett Syndrome Scientific Meeting
Jun 5 – Jun 7 all-day
Date: June 5-7, 2023 Time: All Day Location: Nashville, Tennessee LEARN MORE The research community is invited to join us in Nashville once again for the 2023 IRSF Rett Syndrome Scientific Meeting next June! The goal of this meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from all around the world. Together, we will continue to break down barriers and discuss ways to leverage learning in the lab to be rapidly deployed to the clinic. The meeting will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome. Early bird pricing ends March 24 and the late-breaking abstract submission window will be open April 5-May 5. Thank you to our sponsors: Presenting Sponsor: Gold Sponsor: Silver Sponsor:
Bronze Sponsor:
Friend: DiamiR Biosciences mejo  
Jul
15
Sat
POUND Out Rett 2023 @ IBEW Local 1
Jul 15 all-day
Date: Saturday, July 15, 2023 Time: 12-4 p.m. (Check-in 12p, POUND 1p, Happy Hour 2-4p) Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110) Channel your inner rockstar in POUND® - an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose! Come rock out workout, enjoy refreshments, vendors, a silent auction, and more! INFORMATION & REGISTRATION
Sep
9
Sat
Fill Your Freezer for Rett 2023 @ Online
Sep 9 all-day
The Morrison Family is hosting a pig raffle fundraiser in honor of their daughter, Savannah, who has Rett syndrome. Each prize is for half of a processed pig! Two prizes are available, and one person can win both prizes. Tickets are now available for purchase and the drawing will be hosted on Saturday, September 9th. *Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593
Oct
28
Sat
4th Annual Raise a Glass for Rett Gala @ Watch Virtually or at locations throughout the US
Oct 28 @ 8:00 pm – 9:00 pm
Date: Saturday, October 28, 2023 Time: 8-9 p.m. ET Location: Virtual Livestream + In-Person Viewing Parties across the US Join us for the 4th Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett! GET VIRTUAL TICKETS Grab your commemorative beer or wine glass and join us for an evening of stories from your Rett community, inspiring updates on science and research advancements, and the opportunity to support Rett families all over the world. This special event will be streamed by thousands across the globe, either from one of our viewing parties or from the comfort of your home. Over the past two years, our donors, sponsors, and viewers have raised nearly $1M to empower families and accelerate research towards treatments and cures for Rett. Locations: For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Tim Frank at [email protected].
Jun
18
Tue
2024 IRSF Rett Syndrome Scientific Meeting @ The Westin Westminster
Jun 18 – Jun 19 all-day
Date: June 18-19, 2024 Time: All Day Location: Westminster, Colorado LEARN MORE The research community is invited to join us in Colorado for the 2024 IRSF Rett Syndrome Scientific Meeting next June! Part of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome. Thank you to our sponsors: Presenting Sponsor: Platinum Sponsors:
Jul
8
Mon
Goals Fore Gracie @ Thousand Oaks Golf Club
Jul 8 @ 10:30 am
Date: Monday, July 8, 2024 Time: Registration 9 a.m. ET | Shotgun Start 10:30 a.m. ET Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI 49525) The Visser Family is excited to host their 2nd annual Goals Fore Gracie Golf Outing inspired by their 5-year-old daughter, Gracie. Join us for a round of golf, lunch, raffle, after tournament cocktails, and more! INFORMATION & REGISTRATION
Jul
13
Sat
POUND Out Rett @ IBEW Local 1
Jul 13 @ 1:00 pm – 5:00 pm
Date: Saturday, July 13, 2024 Time: 12-4 p.m. Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110) Channel your inner rockstar in POUND® - an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose! Come rock out workout, enjoy refreshments, vendors, a silent auction, and more! More information coming soon!
Jul
20
Sat
Let’s Flamingle for a Cure @ Henmick Farm & Brewery
Jul 20 @ 2:00 pm – 5:00 pm
Date: Saturday, July 20, 2024 Time: 2-5 p.m. ET Location: Henmick Farm & Brewery (4380 N Old State Rd, Delaware, OH 43015) More information coming soon!
Sep
21
Sat
Raise a Glass for Rett – Kansas @ Olathe Community Center
Sep 21 all-day
Date: Saturday, September 21, 2024 Time: TBD Location: Olathe Community Center (1205 E Kansas City Rd, Olathe, KS 66061) More information coming soon!
Oct
11
Fri
Warrior William Fishing Tournament
Oct 11 all-day
Date: Friday, October 11, 2024 Time: TBD Location: Imperial, MO More information coming soon!
Nov
10
Sun
Capes and Crowns @ Watermark Country Club
Nov 10 @ 12:00 pm
Date: Sunday, November 10, 2024 Time: 12 p.m. ET Location: Watermark Country Club (1600 Galbraith Ave SE, Grand Rapids, MI 49546) More information coming soon!
Raise a Glass for Rett – Houston @ Houston Country Club
Nov 10 @ 6:00 pm – 10:00 pm
Date: Sunday November 10, 2024 Time: 5-9 p.m. CT Location: Houston Country Club (1 Potomac Dr, Houston, TX 77057) More information coming soon!
May
17
Sat
Enchanted Dreams Fantasy Gala for Rett @ The Grove
May 17 @ 4:00 pm
Date: Saturday, May 17, 2025 Time: 4 p.m. ET Location: The Grove in Newport, ME More information coming soon!