Dave and Judy norUDCA?

[Guest guest]

Dave and Judy,

Thank you two

so much for all you do. I appreciate all the time you invest in our repeated

questions and how you are so patient with us.

I hope we can

get this whole norUDCA thing moving and I appreciate your efforts to that end.

I am exhausted after a 45-minute phone call with the pediatric hepatologist

today. (During which time my wonderful –not sarcastic right now—mother

allow my son (4-Aidan) run through a Burger King parking lot while she just let

him go…no stress.) I was told that she would look at the papers, not

from me…on her own from the resources she trusts…like Mieli-Vergani

and Eve . I know those are good resources…I see from today’s

research that she has at least done a poster with Eve when she was in Montreal. I tried to

find URSO stuff from HER, but did not. I guess Dr. Furuya wants to make sure

it is effective pediatrically. I got a lecture on how children are not little

adults…then I did start spitting out some names that should pique her

interest like Dr. Shneider in NYC…still very belligerent. I lowered my

voice and said, hey we are on the same team here and we need to be able to work

together. I am NOT a doctor and I KNOW that, BUT I DO LOVE NOAH and only want

the best for him. I have the time and …she then admitted that she had

not read anything PSC for 2 years. She would bless me with pulling all the new

stuff up and seeing if it changes her mind. She said she is worried about

acidosis? Diarrhea?

Who knows?

Possibly good arguments, but I still think we could slowly increase him.

Can you tell I

am fired up?

I never did get

to chat with you…you are very popular. J

I have some

questions regarding applying for $$. My corporate fundraising endeavor has me

frustrated. The corporations who have plenty to give want written proposals

for grants and I would be willing to undertake that, but I know you are THE MAN

when it comes to that. I don’t want my fire to do good to go to waste

for all of us.

I have a

meeting this week with a friend of mine who is a lobbyist for the hospital

association. I am going to see what she thinks I need to do to get some of

this federal and state money earmarked for us…even $100k would be a

start. We need to become one of the “same” groups that always gets

it. She lobbies in PA and Washington

DC and is a wonderful friend who

will be a good resource.

All the best to

you both,