llwlpn

I was diagnosed 7/11.

I'm sorry to hear that you have ALS. I didn't see date diagnosed on your mini-profile. When were you diagnosed?

Hi. Thank you so much for offering your help for my project. Did you specifically work with patients that have ALS?

Hi susan,
It was so nice meeting you on Thursday. I hope you made it back home ok.

I could have hung out with you and diane all day.

I had the ALS foundation come out to my house today. They gave me a walker, I feel so much safer now.

Keep me posted on how your feeling.

Take Care,
Karen

Hi llwlpn:

Thanks for the message.
We need a few more activist folks to work with the 2 and sometimes 3 of us who are the Steering Committee. Ideas, initiatives, Discussion, Action are the key ingredients to success. We need a ton more of each..... So, a bit of your time and energy is what we ask.

Ed

Ed [email protected]... 252-767-2942 (please respond directly to my email address, or call. Thank you.)

ALS-Treat us Now!

Goals:
1. Our mission is dedicated to the care and cure for ALS.

2. We will passionately lobby for accelerated treatments showing slowed progression, and treatments offering a cure.

3. We will be cooperating with all ALS stakeholders. We will not overlap, replace or supplant ongoing work from other groups.

4. Any fund raising will be solely for the purpose of motivating existing groups, organizations, companies and the government to back winners and to make potential therapies immediately available to Patients suffering with ALS.

Hi llwlpn:

Thanks for supporting Diane's petition.

Our Steering committee is trying to generate several thousand signatures for the petition found here:
http://www.change.org/petitions/corporate-citizens-authorize-and-make-available-compassionate-use-drugs-for-als-patients-now
We wanted to ask if you would consider joining our Steering Committee? We need a few more folks willing to help. I can sent you more information if you'd like.

Thank you.
Ed
[email protected]

Hi,
Just popping in and saying hi. I hope your doing ok on the trial.
Susan

Whew that is a lot of time up there isn't it. He can get so aggitated about those things, but if he gets in he will just have to deal with it I guess. If I can be of any help or you needan ear let me know ok

just wanted to say hey to you, noticed you are on the NP001 trial, we are trying to get my husband on it at Emory. Is it bad?

Oh darn, I will miss you again. My next infusion was supposed to be that week, but I had to postpone it until following week.
I am glad your first week went good. I didn't notice any considerable differences until my 3rd infusion(july). Than my 4th infusion I didnt notice
anything again. Who knows!
Glad you had no side effects.
Karen

Just checking in on you. How did your infusions go? When is your next visit. Mine is Sept. 20,21,22.
Sorry you had to go by yourself to the clinic.
How are you feeling otherwise. I bet its much cooler where your at compared to here in the Valley.
Karen

Hi Karen, I'm good but I tire very easily. The ALS clinic went well. The 2 respiratory guys are a hoot. I saw Cindy the hand therapist and she made me a splint to wear to bed. It really does help. I discovered that I used to work with the dietician several years ago. The worst part was I had to drive down from Show Low but I stopped in Payson for lunch and that helped. My husband was out of town so I had to go by myself. I stayed 2 nights. I have to go back next week to get qualified for the research study and then the following week for my first infusion. I get tired just thinking about it lol.

Hi Laura,
Just checking in. How are you feeling? How did you do at the ALS clinic. Your first one is overwhelming. I love the two respiratory guys, they make me laugh.

Hi Laura,
No I wont be at Mayo next week. I just had my clinic visit at the end of June. I started the NP001 trial in May. I just completed round 3 of infusions.
My next round is August 17th. The care at Mayo is amazing. The clinic is very informative, a bit overwhelming at first.

Maybe sometime our paths will cross there.

Hi Laura,
So Sorry about your diagnoses. I also go to mayo Clinic. Dr. Bosch is my neuro. I have meet Dr. Ross, he is
over seeing the NP001 clinical trial. I am in that trial. Let me know if i can help you in any way.
Karen