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Victor TUI Marathon 2011

Victor Hernandez is raising money for BBS UK
“Victor Hernandez's fundraising”

on 23 May 2011

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We support people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK. We are a user-led organisation, represented by adults with Bardet-Biedl Syndrome (BBS) and parents of children with BBS.

Story

<p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">16/10/2011. Ok, that's it. I am running a Marathon!! I tried to gag it with a Superinjuction but it didn't work, so I guess&nbsp;I can't &nbsp;run away from it now.</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">I have decided to run a Marathon to raise money for the LMBBS Society, Laurence-Moon-Bardet-Biedl Society. Bardet-Biedl is a genetic disease that cause blindness from young ages. Those afected also suffer from&nbsp;kidney disease and obesity. LMBBS support the&nbsp;people and&nbsp;&nbsp;families&nbsp;from the beggining.</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">The Society now supports over 200 families and communicates with over 250 professionals involved in their care.</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">So please donate here and now!!</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Thank you</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Muy buenas a todos!!!</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Pues aqui estamos dispuestos a correr La Maraton. Sera el 16 de Octubre en La Maraton de Palma (Palma de Mallorca, claro).</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Y lo mas importante es que la corro pediros que hagais una donacion para la asociacion LMBBS. Esta asociacion tiene como fin el ayudar y asesosar a pacientes y familias que padecen el Sindrome de Bardet-Biedl. </span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Se trata de una enfermedad genetica rara que provoca ceguera, quistes renales que llevan a fallos renales y transplantes de rinon, obesidad,<span style="mso-spacerun: yes;">&nbsp; </span>polidactilia y a veces retrasos intelectuales. Los primeros sintomas se dan al nacer y muchas veces los ninos se quedan ciegos antes de llegar a la pubertad. Los fallos renales y la obesidad hacen que se deban tener una atencion continuada de la dieta y la alimentacion. Se trata de un sindrome multisistemico y degenerativo, pero con los cuidados y la atencion adecuada los pacientes y las familias pueden llevar una vidamas o menos normalizada. </span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Al ser genetica, no existe un tratamiento y el seg han de ser multidisciplinar, con constantes visitas a diferentes medicos y hospitales. Muchas familias no saben a que atenerse cuando reciben el diagnostico. LMBBS les prepara para lo que pueda suceder. El cambio que provoca<span style="mso-spacerun: yes;">&nbsp; </span>la asociacion asesorando y apoyando<span style="mso-spacerun: yes;">&nbsp; </span>a las familias, dirigiendoles y presionando a las autoridades sanitarias para conseguir una atencion integral es muy grande. </span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Poco sabemos de cual es la funcion de los genes afectados y la asociacion es la primera en entender y colaborar que el estudio de los mismos es lo que en un futuro puede aportar soluciones y posibles tratamientos.</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">No estamos en un buen momento economico y LMBBS, como otras charities lo esta acusando.</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Donar desde esta pagina es sencillo y seguro y el dinero va directamente a parar a LMBBS. Por favor sigue las instrucciones.</span></span></p> <p class="MsoNormal" style="text-align: justify; line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;; color: black; mso-fareast-font-family: 'Times New Roman'; mso-fareast-language: EN-GB;"><span style="font-size: small;">Muchas gracias!!!!!!!!!!!</span></span></p> <p class="MsoNormal" style="text-align: justify; margin: 0cm 0cm 10pt;"><span style="font-family: &quot;Times New Roman&quot;,&quot;serif&quot;;"><span style="font-size: small;">&nbsp;</span></span></p> <p>&nbsp;</p>

Donation summary

Total
£484.64
+ £108.70 Gift Aid
Online
£484.64
Offline
£0.00

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