#rettsyndromeawareness

MOST RECENT

‼️ULTIMA HORA PARA APUNTARSE A LA CENA‼️.
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https://docs.google.com/forms/d/e/1FAIpQLSdYGiQOIRGb-nEohmFVoqr5BJO_I2kIOoPuvDn72lW-jX8xLw/viewform.
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#cenaRett #cenaW #cenasolidaria
#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #cuentaconmigo #entrRETTodos

¡UN BOLSO DE PRINCESAS! #bolsoparati #investigacionparaellas

El modelo UN es uno de los 3 modelos de bolsos que han seleccionado para colaborar en la investigación del síndrome de Rett.

Cuando compras un bolso de "Mi Princesa Rett" haces una donación de 30,00€, incluidos en el precio, que se destinan íntegramente a la investigación de esta enfermedad que está llevando a cabo el grupo para el estudio del síndrome de Rett del Hospital Sant Joan de Déu (HSJD), en Barcelona.

Más información --> eleven600bags.com/princesa-rett/

#investigacion #bolso #bolsosolidario
#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #cuentaconmigo #entrRETTodos #grandescosas #overpowerrett

June’s string of rough weeks seems to be continuing, and we’re not sure if it’s still correlated with the Baclofen she was on a while back (unlikely), or if it’s just the nature of the progression of Rett Syndrome. Her acid reflux has been very bad lately with significant drooling, discomfort and crying. Her head seems to drop more and she seems to have more tone in her trunk which pulls her whole torso forward and leaned over. We also cannot leave her unattended while she’s standing anymore as her balance is terrible and she is constantly leaning backwards and falling down - it is so much work for her to take a step forward & it’s almost like she’s tied to something with a big elastic band. She takes a step or two forward and is pulled right back to where she started from. This is concerning for us as we want to maintain her mobility as much as possible for a multitude of reasons, but we also are scared she’ll fall and hurt herself which could be very serious. And she’s recently developed a Parkinson’s-like tremor in her whole left arm from the shoulder on down. This is not uncommon in Rett but is something we haven’t seen previously in June. We trust, we pray, we hope. But it is still very hard. #rettsyndrome #rettawareness #rettsyndromeawareness #specialneeds

Thanks SO MUCH to everyone who purchased a scent circle to support Rett Syndrome research!! This will help fund all the amazing work Reverse Rett do! Thank you!! 💜💜💜 #rettsyndrome #rettsyndromeawareness #rettsyndromeawarenessmonth #rettprincessabby #sazzlesscents #scentsy #scentsyuk

En la #cenarett contaremos con las voces de @decibelles.musica con su canto a capela. Ya estuvieron con nosotros el año pasado .
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⏳Viernes 23, a las 20.30h, en el Hotel W de Barcelona.
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➡️ Os dejamos el link para inscribiros: https://docs.google.com/forms/d/e/1FAIpQLSdYGiQOIRGb-nEohmFVoqr5BJO_I2kIOoPuvDn72lW-jX8xLw/viewform.
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#musica #acapela #voces #amenizarlacena #decibelles #decibellesmusic
#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #cuentaconmigo #entrRETTodos

Do you believe in destiny? I do. Something that is supposed to happen in your life. When last year Mia started preschool- it was a disaster. Mia was crying all the time, she was lost and didn’t understand the essence of being there. Two teachers have changed in the first couple of weeks because they didn’t know how to behave with Mia. I was ready to give up and take Mia away from school. Until one morning in the beginning of October She came into our lives. She was confident and calm, tender and sweet. She said she had never worked with Rett. She wasn’t afraid of being with Mia, she wasn’t panicking at the thought that Mia might cry. She started communicating with Mia although she had never communicated with non-verbal kid before. She earned Mia’s trust. She is Francesca. She wasn’t supposed to be in Mia’s preschool because she was selected as a tutor in the elementary school in Siena. But.. here comes Universe and gives us a chance. One phone call that was made by the principle of Mia’s school asking if someone from elementary school was available and willing to work with Mia. Mia and Francesca are working together for over a year. Francesca feels Mia and her needs in a very incredible and I should say unique way. I even don’t need to say anything, to remind or to suggest. Mia and Francesca are the best and strongest team I have ever seen👭 And they are surely more than just a teacher and a student, they are partners, friends, colleagues. They are great together. Thanks to Francesca Mia has already accomplished a lot, had made great goals and becomes more and more calm and confident at school. I guess that was meant to be, one telephone call that gave Mia and Francesca a chance to meet. Thank you, Universe for this important and wonderful adventure. Needless to say that we all love Francesca very much, she is fantastic ❤️🙏🏻🌟#rettsyndromeawareness #rettsyndrome #rett #friendship #itwasmeanttobe #teacher #school #grateful #superhero #rettlife #rettgirl #fashionsupermia #scuola #maestra #love #amore #specialneeds #specialneedskid

Ya está aquí el calendario Rett 2019!!
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Lo podéis comprar enviando un mail a info@rett.es o llamando al 963740333, preguntado por Pilar.
Está también a la venta en El Corte Inglés de Valencia, Alicante y Elche.
Precio: 10 euros + gastos envío (todo lo recaudado para la investigación y ayudas Rett) .
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Como ya os contamos el calendario es resultado de un concurso de fotografía, del que nos dieron uno de los premios. .
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#gracias @a.e._sindrome_de_rett por esta gran iniciativa
#calendario #calendariosolidario #contigo #febrero .
#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #cuentaconmigo #entrRETTodos #grandescosas #overpowerrett

📣ENTRADA NUEVA EN EL BLOG📣.
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¿No lo conoces? Pásate por nuestro blog -link en la bio-. Escucharás entrevistas de grandes profesionales, veras vídeos de iniciativas Rett y leerás artículos de especialistas.
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En el post de hoy te contamos como fue el concierto Tándem.
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➡️‼️www.elretto.blogspot.com ‼️.
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#blog #otrasredes #elrettoblog .
#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #cuentaconmigo #entrRETTodos #grandescosas #overpowerrett

Got to go to a special screening of the 100th episode of @blackishabc with a Q&A and reception thanks to @abc7la. Thanks @anthonyanderson @traceeellisross @jeniferlewisforreal @petesaji @jeffmeacham @pmack61 and Prince's sister Sharon for taking pics with me. Everyone was so nice and the staff/security really made sure I had a great time. I already like the show and this episode is a tribute to Prince so I really really liked it!!! 💜😄💜 Be sure to watch it on Tuesday.
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#Rettsyndrome #rettsyndromeawareness #OverPowerRett #blackish #blackish100 #Prince #PrinceTribute #PurpleRain #abc7la #WaltDisneyCompanyStudios #motherofblackhollywood

These two love each other so much. Joshie says he is going to be a Rett doctor when he grows up. So he can help his sister and all the other kids with Rett. Rett siblings are so awesome! 💜 @joshkearney #rettgirl #reverserett #rettsyndrome #rettsyndromeawareness

Tienes 25 motivos para acudir a la cena que organiza en el hotel W la Asociacion Catalana de Síndrome de Rett.
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Porque con tu presencia, 25 niñas afectadas con esta grave enfermedad se beneficiarán de 400 horas de terapia.
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Tienes una cita el próximo viernes 23 de noviembre a las 20:30h!
T'esperem al W!, Tu ets la clau!
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INSCRIPCIONES ABIERTAS AQUI: https://docs.google.com/forms/d/e/1FAIpQLSdYGiQOIRGb-nEohmFVoqr5BJO_I2kIOoPuvDn72lW-jX8xLw/viewform.
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El vídeo es de la cena del año pasado, por eso dice 24 😉. Pero os esperamos el VIERNES 23!! .
#savethedate #23noviembre #cenarett #cenarettW #HotelW

#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #cuentaconmigo #entrRETTodos
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Herkese Merhaba,
Aşağıda vermiş olduğum linki tüm rett sendromlu ailelerin tıklayarak ilgili anketi doldurmasını önemle rica ederim. Yavrularımız için Türkiye'de Rett Sendromu üzerine ilk akademik çalışma olacaktır. Anket tüm detayları kapsamaktadır ve gizlilik esas alınarak hazırlanmıştır.
🇹🇷
https://docs.google.com/forms/d/e/1FAIpQLSf7DfU00hTHs7tDcitfra1_Zhg4zQ1a2YumhjoY45WLmUnGJw/viewform 🇹🇷
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Sevgili rett sendromlu aileler lütfen profildeki linke tıklayarak anketi doldurunuz!!!
#rettsendromu
#rettsyndrome
#rettsyndromeawareness

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