Letters

Title

LETTERS TO COPY, PASTE AND PERSONALIZE!

Dear_____________,

Whether you may or may not know, I have Trimethylaminuria (TMAU), a rare metabolic disorder. People who have this disorder cannot metabolize certain compounds in their liver. As a result, they give off a variety of strong and volatile odors that are offensive and may cause some people around them to cough or sneeze uncontrollably. Although I may not talk about it, living with TMAU is extremely difficult for me. The odor is only the tip of the iceberg; it’s the social and psychological aspects of living with TMAU that sometimes make me want to run into my bedroom and not come out.

Because TMAU is so rare, there is still a lot of research that needs to be done. Also, because it is rare, the funding for TMAU research is falling quite short of what is needed. I have decided that I cannot just sit and hope someone comes up with a cure. I am working with other TMAU sufferers and their supportive families / friends / neighbors / supporters in a new challenge -- the Reaching for Research Resources fundraising campaign (http://rrr-tmau.com/). We are committed to reaching personal fundraising goals and I hope you can help by joining my own team and making a donation.

It would mean a lot to me if you could help my cause by making a donation to this TMAU Research Fund which is managed by NORD (National Organization for Rare Disorders) http://www.rarediseases.org/ a well known and respected national non-profit organization** that advocates for rare disease organizations and individuals. Our cause needs all the help it can get and we welcome all donations with open arms... $1, $5, $100, $500 – we are extremely grateful for your generosity.

Working together, we hope to raise a minimum of $30,000. That amount will be added to the funds raised todate; once we reach at least $35,000 we will be able to solicit RFPs (Request For Proposals) from researchers. NORD's medical review board will chose the best proposal, based of merit, for the grant award. The researcher with the winning proposal for TMAU research will be given funding to begin that work. Getting more research done will help pave the way for better understanding of the mechanisms of TMAU, testing techniques, treatment options and / or a cure, later down the road.

With the answers uncovered with these seeding projects, we will continue to pursue the large scale funding we need from pubic and private donors and stake holders. The competition for rare diseases research funding is fierce and we want to contribute in every way that we can; the Reaching for Research Resources challenge is a first big step in this direction. Please see below for detailed instructions on how to donate. I really appreciate your consideration. Thank You!

Sincerely,

Your name here

Reaching for Research Resources Challenge – logistics

There are three ways to donate:

Donate online (http://www.rarediseases.org/helping/donate)

Send a check by mail (link to full mailing address)

Write check (made out to NORD, TMAU Research Fund) and I will mail checks to NORD

Steps to donate to the NORD TMAU Research Restricted Fund (Online)

Go to http://www.rarediseases.org/helping/donate

Choose you donation amount (or choose “other amount” if that suits you better)

Where it reads “In Honor Of”, please type in the following: TMAU Restricted Research Fund

All other questions are Optional

Click on “View Cart/Check Out; then Proceed to Checkout

Please type in your address and billing info and click “Checkout”

NORD will mail you a letter confirming your donation. You can use this letter receipt for tax deduction purposes.

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Steps to donate to the NORD TMAU Research Restricted Fund (Regular Mail)

Write a Check for your chosen amount to “NORD” (or “National Organization for Rare Disorders”)

Under Memo on your check write “ TMAU Restricted Research Fund”

Mail your check to:

National Organization for Rare Disorders

For: TMAU Restricted Research Fund

55 Kenosia Avenue

PO Box 1968

Danbury, CT 06813-1968

NORD will mail you a letter confirming your donation. You can use this for Tax deduction purposes.

**/ For more information about NORD’s fiscal management:

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6741

Dear friends,

As you probably know, I have Trimethylaminuria (TMAU), a rare metabolic disorder. People who have this disorder cannot metabolize certain compounds in the liver. If a person has this condition, they are considered to have a defective digestive enzyme function and this results in abnormal TMA metabolism. Although I may not talk about it, living with TMAU is extremely difficult for me and my family. Like everyone else, people with this condition just want to lead normal lives. Currently, there is no medicine or treatment for this condition and no cure.

Because TMAU is rare, a lot of research needs to be done. I am working with other sufferers and their families, friends, and neighbors in a new challenge -- the Reaching for Research Resources fundraising campaign. We are committed to reaching personal fundraising goals and I hope you can help by joining my team and making a donation.

It would mean a lot to me if you could help by making a donation to the TMAU Research Fund, which is managed by NORD (National Organization for Rare Disorders) http://www.rarediseases.org/ a non-profit organization** that advocates for rare disease organizations and individuals. Our cause needs all the help it can get and we welcome donations in any amount with open arms... $1, $5, $100, $500. We are extremely grateful for your generosity.

Working together, we hope to raise a minimum of $30,000. I have set a personal goal of $1000. Please see below for detailed instructions on how to donate. I appreciate your consideration.