Rare Disease Day US: Alone we are Rare.
Together we are Strong.
The RRR campaign managers are joining NORD and celebrating the International Day for Rare Diseases on Sunday, February 28, 2010. We are also declaring Sunday February 28, 2010 as the first ever:
International Trimethylaminuria (TMAU) Awareness Day and International medical malodors Awareness Day.
We are joined by the TMAU community and our supporters:
MEBO Research
The Trimethylaminuria Foundation
The NY/NJ/CT TMAU support Group
The Trimethylaminuria Yahoo support group
If you have TMAU, suspect you do or are a supporter of someone who does, join us in raising awareness and funds for meaningful research proposals through our established TMAU Research Fund at NORD. As a community, as of January 14th we have raised $9585.00. We set out on October 1, 2009 to reach a goal of $30,000 in 1 year to jump start some meaningful TMAU research work and we are proud to say that we are on our way there.
February 28th is a great day to push forward. To participate on this day, please make any donation amount you or your supporters can give. (Even if it is a dollar!) It will be exciting to see how many people we can get involved in this process!
NORD will give us the total of all donations made online that day as well as checks mailed in the week prior and following. More exciting, NORD will give us the total amount of people that donate that day! As the NORD slogan states, “Alone we are Rare. Together we are strong.” ITD will be a day in which we can all reflect on the struggles and the victories that we, both individually and as a community face. Let this year serve as the benchmark so that in future years we can have a point of reference of how far we have come. How many people can we ask to support us in our effort to get research started for TMAU!
To Donate online:
•Go to
http:www.rarediseases.org
•Click on Donate Now
•Enter donation amount or choose other amount
•Under “In Honor of,” please type the following for rare Disorders”
TMAU Restricted Research Fund
•Click on View cart, Checkout. Then proceed to checkout.
•Please type on your address and billing info and click “Checkout”
•NORD will mail you a letter confirming your donation to the TMAU Research Fund which can be used for tax deduction purposes in the U.S.
Mail to:
•Write a check with your chosen amount to “National Organization for rare Disorders”
• Under memo write “TMAU Restricted Research Fund.”
• Mail check to NORD 55 Kenosia Avenue PO BOX 1968 Danbury, CT 06813-1968
For more info. Please go to
http://www.rrr-tmau.org
0 comments: