New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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America - new legislation trying to get throu.

Discussion in 'Action Alerts and Advocacy' started by taniaaust1, Jul 13, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Having trouble getting your children to school, due to you being sick yourself with ME? You may want to support this getting throu.
    (and maybe write to your orgs to see if they will support NORD (National organisation for rare disorders) in getting this change throu legislation). (you'll have to scroll down page to the 7th May)
    "NYS Bill S595/A4760 REVISED COPY
    Good Afternoon,

    My name is Tara Notrica. I am a married 47 year old mother of a 12 year old boy and a 7 year old girl. On April 1, 2011, I was diagnosed with a form of Mast Cell Disease. I spent years being gravely ill and misdiagnosed. I visited numerous health institutions in various parts of the country. When I was unable to personally travel, my medical records and emails were sent all over the country and even all over the world in my desperate attempts to find out the root cause of my illness. Once I was finally diagnosed, the next battle was to find a treatment plan that would hopefully manage my symptoms and help to restore my quality of life, as there is no cure for the disease.

    Over the years, I was not only contending with my health but also another big obstacle that we were confronted with. My house was not eligible for school bus transportation that could be provided by my school district. For years, my husband and I had to find an alternate means to safely and consistently transport my children to and from school, as I was too sick to either drive them or walk them.

    As a result, I have been strongly advocating for the passage of NYS Bill S595/A4760. Bill S595/A4760 "Allows boards of education to provide transportation to and from school for a child for a lesser distance than two miles if the parent or guardian of the child has a physically limiting disability which renders him or her unable to accompany the child to and from school." On June 14, 2011, Bill S595 was passed unanimously in the Senate. Bill A4760 currently has 19 Co-sponsors and 26 Multi-sponsors. Additionally, I have been able to secure numerous letters of support, including one from NORD which is attached.

    At this time, I am reaching out to ask for your support in an effort to get Bill S595/A4760 signed into law by Governor Cuomo. I would be very grateful if you could call,email or write to your local Assembly Member and Senator. I would also like to ask you to please call the Albany office of AssemblyWoman Catherine Nolan at 518-455-4851. AssemblyWoman Nolan is the Chair of the Education Committee where the bill currently sits. Please ask Assemblywoman Nolan to please place Bill A4760 on the Education Committee agenda. Bill S595 continues to once again move quickly through the process in the Senate. Additional information can be found on the websites of NYS Assembly or NYS senate.

    If you require any further information, please feel free to contact me at my home at 516-546-8618 or by email at I look very forward to your support. Thank you for your time and consideration.

    Tara Notrica

    NORD Statement about NYS Bill A4760 / S595
    PDF version [DOWNLOAD]
    Word document version [DOWNLOAD]"
    GcMAF Australia likes this.

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