Summer Odyssey 2001

Raising Awareness and Raising Funds

The Webster dictionary definition for odyssey is "a long wandering; an intellectual or spiritual quest." For us dealing with ACC, we all understand that it can be all of that and more. It really is a journey, a quest, and a discovery process. This summer quest is an opportunity to bring us together in a unique way to do some positive things for the bigger journey we find ourselves walking together.

We are asking our support group members, and you, to make a commitment to do two things by the end of August. First, contribute some amount of money to the NORD ACC Restricted Clinical Research Fund. For some this may be just $5 or $10, and for others it may be 100’s or 1000’s of dollars – whatever you feel you can afford. Many companies have money set aside for charity. You may only need to write a request to your company’s charitable contributions committee and ask that a donation be made to the ACC Fund at NORD. This is not about who can do the most. It is about all of us doing something within our capabilities and being able to say "I helped advance ACC research."

The second commitment is to do something to raise awareness about ACC. This may mean posting the Summer Odyssey Flyer at hospitals, libraries or other public places, writing an article about the ACC group for your company newsletter or local newspaper, or making your hospital aware of this ACC group.

NORD is a non-profit organization in New Fairfield, Connecticut, which sponsors research projects for "orphan" diseases - those diseases which, because they are so rare, don't benefit from publicly-funded medical research or private research money. Adenoid Cystic Carcinoma (ACC) is in this category. Once NORD receives $35,000 in donations for a designated disease, it will initiate a search for a deserving research project and award a grant of $30,000 to that project. $5,000 of the $35,000 goes to NORD's expenses.

Donations should be sent to NORD with a note stating that the donation is for the Adenoid Cystic Carcinoma Fund. Please also note on the check that it is for the Adenoid Cystic Carcinoma Fund. Donations should be mailed to:

The National Organization for Rare Disorders, Inc.

100 Route 37, P.O. Box 8923

New Fairfield, CT 06812-8923