Tag Archives: disability

BALANCE 2010 ... THANK YOU ALL ....

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MARY AND Josele

Hello, begins a new year and I stop to think that we have in this that leaves us. There are many kilometers, many memories, many new friends, and I wish I could write them not remain forgotten.
We started the year with our participation in the Barcelona Marathon . Incredible display of media, people participate more than 13000 people worldwide. Began our campaign to raise funds for the Foundation San Joan de Deu.
Days after receive from Cadena 100 Award "Right Foot" from the hands of Abel Anton, great person and great athlete. No doubt a tribute to all our work.
One day we received one of the most exciting calls this year, we called Paola, screenwriter and director who wrote the script for our movie "Finish Line "and screaming on the phone told me .... Josele movie we got to take forward this documentary, which will be produced by "Scandal Films" see the light and mid-2011.
We participate in Vitoria marathon , marathon Castellón months also had our first race for mountain, Half Marathon Tuejar Mountains, where we demonstrated that neither the barriers of nature can stop the car of Mary, and other half marathons, highlighting Petra, and valence , and Pujaeta to the Montelieta , etc ..
In most of these tests we have included in the stock broker, information leaflets about us and what we seek, reaching more than 14,000 copies distributed, and have done other projects, thanks to great friends and athletes, for fundraising against S. Rett.
We created a new blog " I also pushed the carro.com "which will accommodate all the initiatives that want to have a purpose in solidarity against S. Rett, and already has many followers.
On the other hand our blog My World Rett, and has over 142,000 visits and over 2100 followers on Facebook.
We recently put up for sale by Fundación San Joan de Deu a supportive running shirts . The proceeds of the sale is intended to combat S. Rett, and have gained wide acceptance and popularity.
Specifying the year 2010, we reached many people and we have raised modestly and with much effort, funds that will immediately turn to describe to you in more detail.

These funds go directly to funding the research project from Rett syndrome. You have to add other funds, also raised, making it through the National Association S. Rett ..

I can not conclude without mentioning these very special friends who through their efforts, and his work have enabled us to be here today, that we may share this information ... Thanks to all those who push us every day ...

Rett Syndrome, whenever it is closer to its "final", this is the best of our goals ...

Maria and Josele ...

BECOME A PETRER

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¿que escucha Maria ?

Hear what Maria?

Hello friends, I write these lines after reading the mail that we received from John, a member of the organization of the Half Marathon of Petrer (Alicante).
Write to us inviting us to participate in this edition of the race, making us the honor to assign to the dorsal number 2, as is the second year around. For us it is very gratifying that we are not only welcome to proof, but it year after year, we are invited.
This year we will have some changes that make us better carry over the miles, as is the new car thanks to Blue Line sports team, Maria will make rather more comfortable, and incidentally to me to push costs less. You luciremos luggage through the Valencian Association Rett Syndrome. What I hope does not change, is the great reception we have in this city, and above all the friendliness of our small family Romero, who live there.
We are eager to perform that will be our first race this season. See you next day in Petrel October 18 ...

Maria and Josele.

Necessary drugs ... are all covered by the SS?

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Hi, recently, we observed that Maria drops her hair thoroughly and alarmingly. We got in touch with your pediatrician, and recommended a shock treatment, because we assume that it would be caused by vitamin deficiency of some sort. So without hesitation acquire prescription drugs. What was our surprise when none of the items, enter the Social Security system. Specifically they are quite expensive, and of course, to see you do, do not buy them and see Mary as her hair falls out, or pay and try to see what happens, although you will not do anything.
Since Maria was diagnosed, it's been about eight years old using a product against constipation, and you need daily, whether or if. This product is not covered either, and remember that constipation is a clear and evident symptoms of Rett syndrome, and suffering all girls.
In any case, it should be clear that not all health care needs a person with the condition of Mary, are subject to Social Security scheme, and we have to face them without hesitation.
It is important to note this detail as popular is the idea that all they need is free, and nothing further from reality ...
Sure you know more like them, I think there are regions that are not even including diapers.
Make it clear that this must change, and that girls and families who unfortunately they live in this world, do not receive the necessary support by the government ....

Josele and Maria

back from vacation.

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Maria Ferre

Maria Ferre

For days I have not written anything, but after being on vacation and enjoy a few days on the beach, I think now is the time. We were in Xilxes, in a very quiet beach, where Maria was able to enjoy long periods in the water, at the mercy of the waves that had. This zone is perfectly entitled to go with the disabled, and brings together many conditions for a few days off from the daily grind.
Soon begin to realize our particular campaign claiming enforcement of dependence, which has passed since November 2006, and still do not know anyone that perceiving anything from this law in Valencia
We keep you informed, because it sure is not easy.

LAW OF DEPENDENCE

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Maria, Cristina y Dani

Maria, Christina and Dani

Hi, as you all know some years ago passed a law that many need, and that is full of good intentions but few results. Here in Valencia, that Maria is a beneficiary of that law, fill the application in June 2008, and well, I can say that a year ago, and we have nothing or almost nothing.
This year has past, we have been visited by a social worker from the Department of Social Welfare, I make a favorable report, a visit from a social worker by the City, he described Mary as Great Dependent, and referred the report back to the Department of Social Welfare, where within three months should have issued a valuation report, to continue with an endless process.
Well, dated March 23, 2009 came the report of the Town Hall offices, and this is the date from Conselleria not know anything, or whether the three months that they are established, I have jumped.
What else we have to wait? if the time that the administration is created, already in itself excessive, they are popping themselves .... I can say ....
Maria has a disability of 87% and needs attention every day and every night but it seems that they have to apply the law, all they can delay. We know that after this procedure will be others that will surely like this, so maybe, and hopefully after a couple of years or three of your request, we began to see light at the end the tunnel.
Best of all this is that the media are the politicians saying how good they are and what help this group of people that they live a life that does not deserve anyone and we already have enough of ours to us to share in an administrative delay not deserve.
On behalf of Maria, just ask one thing LAW THAT APPLY NOW

Maria and Josele ...

CARING MORE THAN EVER ...

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Hi, few days after the charity concert, I called to comentarme the details of that day. I was told it was a great success, not only did many people in solidarity with Rett Syndrome went to that concert, but it also authors who acted in that event is in solidarity hizieron, as none of them would be paid in some way by the acting. This makes us think that perhaps in the not too distant future we can attend another concert, if it is more massive, have a place where all those who in addition to the sport, have other goals in life.
Thank you for everything you have done, first authors of the concert, Fernando Bas, Linda Franceschini, (LINN) and Gilbertástico to all who came to watch this show so special, all members of Air Nostrum, and of course a lot of people that I have to thank both, members of Blue Line Solidarity.
Thanks Jack.

PS-I attached the blogs of authors, if you want to visit, and thank them.

LINN

GILBERTÁSTICO

Maria and Josele

Vitoria-Gasteiz MARATHON 2009

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Here's the video of Vitoria Marathon, a race he would recommend to anyone who likes good food, and run from a multitude of "aupas" and something more important, with a superb organization both in sports, and personally . We were met at the city and in very few places we have been, and I remember that even today there are tests that are not received.
But I want to make clear that we had a superb weekend in all aspects, from the hotel to the last detail imaginable, from the time it was good, made the sun and fresh air, very cool, that caught my attention , no pollution

I would like if anyone has thought about doing a marathon, there is one think that if you go once, surely repeat, that is the Marathon Vitoria, at least we certainly repeat next year.
Thanks to the organization, especially Boris, who made this video we can see, Eduardo and Martin, for making it possible participásemos in the test with honors, Aurelio, for introducing us to Boris, and the whole city by show us that "everything is possible."
You are an example, will not change ever ....

Maria and Josele ...

"LAW OF THE UNIT"

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Hi, we have the opportunity to show our dear politicians who are disabled, which require you to apply the law, they are great employees, it's really nice out in newspapers and stuff their mouths saying how good they are and how well they do things, but those most in need and who can not fend for themselves, are not getting anything.
The records are an intolerable delay, and this does not look to change, if not worse. I encourage you to asistais this concentration to which of course, Maria and I go and I hope that many more people to see if given the hint.
We can not miss this opportunity, to see if we can get
apply the law AND

Maria and Josele ...

CHARITY CONCERT LINE BLUE

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concierto solidario Rett

Rett charity concert

Hi, I have the pleasure to inform you that from the Blue Line Club, will organize the first charity concert. In this event, and already starting to get used to the important thing is not to stop and do one thing after another, we have agreed, and in the El Loco, located on the street Scholar Orellana, 12 Valencia, act: Gilbertástico , Lynn, Fernando and Bas. Tickets are 10 Euros, and most importantly, the collection designed by equal parts anger to the Valencian Association and Rett Syndrome Foundation Juan Bonal in Brazil. Regarding VS Rett Association, the funds will go for the ambitious research project that takes place in San Joan de Deu hospital, to see if we're lucky we have discovered something scream that will make the Rett girls, stop being so.

For the same reason for going through proceeds of the rights of the author of "creatures from another planet" by Elizabeth Pedrosa, where in his BLOG there is also the account number where contributions are collected to fund this research project.

Here you have more information, the Forum Blue Line

A new Target, Vitoria Marathon 2009

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Dear friends, after a few days of rest after traveling two of the longest stages of the 131K Solidarity, started training again, to make new goals, such that we will cross that Mary enjoy what you like, and so that little by little, mile by mile, we can all beat between Rett syndrome.
Some time ago, send a message to the organization so popular Marathon Vitoria, or of Martin Fiz, with amazing speed, they said, they told me there was no problem for Maria, and her car, participate in this marathon.
Now closer to the event, I look at the condition can begin to announce this new goal. Soon, I will report on how things go, but progress that:

We go to Vitoria

RACE INFORMATION

Maria and Josele ...