[Sharon]

February 28th is the official "Rare Disease Day".

It is also "Trimethylaminuria Awareness Day". Let's make our mark by making a donation to the TMAU cause by donating on or around that day. Whether you are a sufferer or supporter your donation will show a vote of support.

For more information:
http://rrr-tmau.org/untitled2.html

More about Rare Disease Day
http://www.rarediseaseday.org/

[Sharon]

For the US: Please check this map link to see if your state has proclaimed Feb 28 as Rare Disease Day.
http://rarediseaseday.us/rdd/get-inv...in-your-state/

If it is not then go to "take action now", fill out form and email to their
office. Follow up with a phone call on Monday.
http://www.emailyourgovernor.com/
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I submitted the form letter this week not expecting much. Followed the email
with a call to the Govenor's office yesteday to check if they received it. The
woman who does proclamations said the request was approved and they are sending a copy of the proclamation for my state of MASSACHUSETTS. Who knew you could do that??????????
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If you live outside of the US check raresdiseaseday.org to see what your country is doing and how you can help. Here is a sample for Australia
http://www.rarediseaseday.org/2010/country/au/australia

[Sharon]

Don't forget about this Sunday, the second anniversary of "Rare Disease Day" and the very first "Trimethylaminuria Awareness Day".

I hope everyone can donate even a penny that day to show how
many support research and Rare Diseases.

The US and Canada have been able to make online donations. Others please try and if not you can mail it in.

I really want to see the number of people that will go the extra step to donate that penny, dollar or what ever they can. The numbers will be available after if you want to see them. Donators names are not disclosed unless you choose to.
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" Alone we are Rare. Together we are Strong"
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For more information:
http://rrr-tmau.org/untitled2.html

[Sharon]

Today is "Rare Disease Day" and the very first "Trimethylaminuria Awareness Day".

Have a nice day.

See how you can help:
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" Alone we are Rare. Together we are Strong"
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For more information:
http://rrr-tmau.org/untitled2.html

[hope4us]

Sharon,
Thank you so much!

Glenna

[mpdela]

We did it guys! IDEAS FOR CHANGE IN AMERICA has announced the top 10 Ideas for Change in America, and the '25 Million+, It is time to care about Rare Disease' was one of the 10 winners of the competition.

25 Million+, It is Time to Care About Rare Disease by Catherine Calhoun from Saint Francisville, Louisiana, who was inspired to start advocating on behalf of those with rare diseases after attending a January 2010 conference at the National Institutes of Health hosted by the Office of Rare Disease Research. She has dedicated herself to fighting on behalf of the almost 30 million people in America who have such diseases, with the aim of encouraging knowledge sharing between doctors in hopes of finding cures.

Now that the voting has concluded, the hard work of real change begins. We will be presenting these ideas to relevant members of the Obama Administration and Congress, and subsequently helping to initiate national campaigns behind each winning idea. http://www.change.org/ideas

For those of you whose favorite ideas aren't among the winners, we also want to send a message: we're here to help. One of the things we're dedicated to at Change.org is supporting grassroots campaigns for change regardless of their size. To enable this, we recently launched a powerful free petition tool that enables you to easily start online campaigns to pressure Congress, government agencies, local officials, or companies on any issue. You can find out more about how to start a petition on Change.org here: http://www.change.org/petition.

Thanks for being the most important part of Ideas for Change in America 2010. This initiative is successful because of people like you, and we hope to continue to have you as an active member of the Change.org community as we work together to transform these ideas, and others, into real change in the weeks and months ahead.

- The Change.org Team

Thanks to everyone who participated, we have gotten the Obama Administration's attention to this cause.

María