Category Archives: Conferences

Unity, Strength, Hope Conference

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This is a reminder about the upcoming conference on MECP2 related disorders in June. This event is really two conferences in one: (1) A family conference for those whose family members are affected by Rett syndrome, MECP2 duplication syndrome, FOXG1 syndrome, CDKL5 disorder, or other MECP2 related syndromes., and (2) a concurrent professional and research symposium on the same disorders. The conference will take place at the Eaglewood Resort in Illinois, June 22-24, 2016.

 

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MECP2 Duplication Syndrome Conference Poll

RETT Syndrome Conference

26 -29 June 2014

Washington, DC, USA

Many families of individuals with MECP2 Duplication Syndrome have received a poll from Pam Albert regarding the possibility of having a MECP2 Duplication Syndrome Conference in conjunction with the Rett Syndrome Conference in June of 2014. If you did not receive this survey and would consider attending such a conference, please fill out the following survey. We need your input to determine if we can make this work.

Please respond to this poll below only if you have not already responded to the poll by e-mail. Continue reading

2nd MECP2 Duplication Syndrome Family Conference

2nd MECP2The 2nd MECP2 Duplication Syndrome Family Conference will be held in Houston, Texas, March 27-29, 2013.  To download a conference brochure, use this link: 2013 Houston MECP2 Conference Brochure   [Click on this link to download Conference Brochure]. The conference will be held at the Hilton Plaza Medical Center Hotel: Continue reading

UK Conference

11 May 2013 – 9.30 to 4.00

Greater Manchester Police Sports and Social Club, The Hough End Centre. Mauldeth Road West. Chorlton. Manchester. M21 7SX

Cost of the event is £25 per adult and all children are free. This includes a hot buffet lunch and tea/coffee. Snacks/drinks will be provided for all children.
Booking forms and a programme will be available early in the New year.

Professor Jill Clayton-Smith (Geneticist) will give a presentation on MECP2 Duplication Syndrome and offer support to individual families.
Tobii Eye-Gaze will offer every affected child a communication eye-gaze trial. This will be ongoing throughout the day.
Clifford Challenger from Epilepsy Action (service manager in the north east) will give a presentation and offer advise to families.
Nordoff Robbins will involve all children/young adults and family members in a Music Therapy Session.

 

for more infor,sgiom, contsct rhonaconnelly1@aol.com

2013 MECP2 Duplication Syndrome Family Conference Survey

If you are hoping to attend the 2013 MECP2 Duplication Syndrome Family Conference in Houston, please fill out this short 4-question survey to assist the conference committee in planning. CLICK HERE FOR SURVEY

We need to get an approximate idea of attendance to ensure a good fit of facilities, so just let us know what you are currently thinking you might be doing, even if you haven’t made any final decision.

 

Continue reading

Save These Dates

– – – – 27 – 29 March 2013 – – – –

These have now been confirmed for the next MECP2 Family Conference to be held in Houston, Texas.

March 27-29, 2013

More details to follow.

Family Conference Survey

The 2013 MECP2 Duplication Syndrome Family Conference is currently being planned. This survey is intended for families to provide input on the conference program. It is a short survey with just 10 questions, please take a few minutes to provide some input.Feel free to answer as many questions as you like and ignore some questions if you feel they are not applicable or you have no opinion about them. Continue reading

May in Manchester

News icon The UK MECP2 Duplication Syndrome Support Group is planning a conference for 11 May 2013 at the Hough End Conference Centre. More details will follow on this website. Mark your calendar! For more information, contact rhonaconnelly1@aol.com or mobile 07806470290.

MECP2 Family Conference Video

Here is the final cut of the Introduction from the May 2011 MECP2 Family Conference in Houston for anyone who hasn’t seen it. Thanks to Dr. Ramocki, Pam Albert, Dr. Zoghbi, The Blue Bird Circle Rett Center, Baylor College of Medicine, The JP Das Centre at the University of Alberta, and to everyone else who made this conference a great success.

Video Lecture from Genetics Researcher Jill Clayton-Smith

AT the recent Manchester meeting, Professor Jill Clayton-Smith gave an excellent review of MECP2 Duplication Syndrome that is available on video. It is include below in two parts. There is some background noise, but overall great resources. Continue reading