Events

Feb
11
Tue
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RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm

Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions.

Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego.
Dr. Pichard is Rettsyndrome.org’s Chief Science Officer

Visit our Education page for upcoming 2020 webinar topics, and to access recording links from past webcasts and associated QA documents.

Register Today

Mar
1
Sun
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Napa Valley 1/2 & Full Marathon
Mar 1 @ 6:00 am

Join us for the Napa Valley Half & Full Marathon!

Ever wanted to run through wine country? Well here is your chance! Rettsyndrome.org has been granted ten charity bibs for the 2020 Napa Valley Half & Full Marathon! We are excited for this new partnership and can’t wait to grow our #RettRacer team! Help to end Rett syndrome while you run through wine country at this Boston qualifier race. Whether you plan to run or want to cheer on our team, please note all of the exciting information below!

Date: Sunday, March 1st, 2020
Location: Napa, California
Website (inclusive of hotel details, routes, etc): https://napavalleymarathon.org/

To participate as a Rett Racer in the Napa Valley Half or Full Marathon, please follow the steps below. *Note: there is a $2500 fundraising requirement for this event*
Runners are responsible for all expenses incurred from race (registration, travel, etc).

  1. Register for the full or half marathon at https://napavalleymarathon.org/
  2. Half marathon Rett code (10% reg discount): RETTHALF2020
  3. Full marathon Rett code (10% reg discount): RETTFULL2020
  4. After registration, please visit Napa Valley team page to create your personal fundraising page.
  5. https://rettracer.everydayhero.com/us/napa-valley-2020-runners
  6. Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
  7. Create & customize your fundraising page and share via social media and email with your contacts.
  8. Contact Jackie Ventura at jventura@rettsyndrome.org to order your Rett Racer t-shirt.

Rettsyndrome.org will have a tent at location TBD where runners can congregate post-race, Rett families can mingle and RSO will be passing out awareness information to spectators!

Please follow this event to stay current on up to date information.

Mar
10
Tue
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RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm

Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.

We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Mar
21
Sat
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Cammy Can’s Cinderella Story
Mar 21 @ 5:00 pm – 10:00 pm

Cammy's Golden birthday

Help us celebrate Cammy’s 11th birthday by attending and raising a ton of money to find a cure so she can drink with you in Sidebar on her 21st birthday!

WHEN | March 21, 2020 5PM – 10PM
WHERE | Sidebar, 221 N LaSalle St., Chicago, IL

All you can eat and open bar including craft beer, wine, cocktails from 5-10PM.
Food provided by Buona Beef including beef, sausage, pasta and salad.

Registration & Information

Make a Donation

Follow CAMMY CAN on Facebook

Apr
23
Thu
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RettEd: Maximizing Neuroplasticity in Therapies feat. Dr. Pam Diener
Apr 23 @ 1:00 pm

SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use.

Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher.

Registration & Information

Apr
25
Sat
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Run For Rett 2020
Apr 25 @ 8:30 am

WHEN: Saturday, April 25, 2020
TIME: 8:30 AM
LOCATION: Busse Woods, Grove 28
Elk Grove Village, IL
Contact info: Diane Ross (diross62@aol.com).

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.

Information & Registration

May
1
Fri
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The Great Rett Shootout
May 1 @ 9:00 am

The Shirley family is hosting the 2nd Annual Great Rett Shootout.
Friday, May 1st.

Come out and break some clays as they raise funds on behalf of their daughter Dayton and many others affected by Rett syndrome.

Registration, sponsorships and donation options are listed below. For any questions, please contact Kent & Amanda Shirley at tgrsevents@gmail.com. Be sure to follow their Facebook page for event updates: https://www.facebook.com/TheGreatRettShootout/.

Information & Registration

May
2
Sat
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13th Annual St Louis Strollathon
May 2 @ 9:00 am

13th Annual St Louis Strollathon

Saturday, May 2th, 2020
Registration: 9:00am, Stroll: 10:00am
Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146

Event Chairs: Joyce Opinsky & Amy Kreher (stlstrollathon@gmail.com)
Website: www.st-louis.strollathon.org
FB event: https://www.facebook.com/events/481490805883829/

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4th Annual Iowa Strollathon
May 2 @ 9:00 am

4th Annual Iowa Strollathon

Saturday, May 2th, 2020
Time: 11:00am-2:00pm
Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021

Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer (CureRettIowa@gmail.com)
Website: www.iowa.strollathon.org
FB event: https://www.facebook.com/events/944620542600601/

May
11
Mon
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8th Annual Charamella Golf Tournament
May 11 @ 11:00 am

8th Annual Charamella Golf Tournament

Date: May 11, 2020
Time: 11am – 7pm
Location: Westover Country Club
401 S Schuylkill Ave
Norristown, PA 19403

Mark Charamella was the father of a daughter with Rett syndrome. He did everything he could to make her life better. It is in his honor that his family and friends gather to celebrate a life well lived and give to a cause that was close to his heart.

Information & Registration