FUNDING TOTAL AS OF JUNE 12, 2009

[Lake of the Woods]

Hello everyone,
I just heard back from NORD as I had requested an update. This has been approximately 1 month since we did our bulk emailing to everyone on the website, thanks to Jeff.

Total is now $6,600.00. This is up from $4,450.00 that we had prior to the bulk emailing so it looks like to helped immensely and we will have to think about doing that again in the future.

Also, I think NORD is sending out a pamphlet to everyone who has donated and it is interesting to see what they are up to. The United States just had their first "Rare Disease Day" this year to raise awareness of rare disease.

Many thanks to everyone who is donating and supporting our cause! I will contact NORD quarterly and get updates on how the funding is progressing and advise accordingly.

Peggy