Dear SK,
Thank you for your lovely email. Knowing that we might be kindred spirits makes me want to do all that I can to help this org., I understand how beaten down and exhausted some of these fine people feel (I have had these moments especially when I am battling through "flare-ups"). I am hoping that the promise of relieving there suffering will re-lite a fire in them to get their energy up and use it to fight for our lives!
Venus Williams has gone to The Sjogren's Foundation as her support, unfortunately I have had a relationship with them and they have little to no connection with research organizations or doctors who have an interest in promoting this.
Not Venus Williams, who has SS, but Harold Ramis who recently die from vasculitis, will give us the opportunity to shed light on autoimmune disease. There are more autoimmune diseases, than types of cancer (over 300 vs 80+).
Less than six hours of having read the first article about Harold Ramis' death, and which made the following statement "Mr. Ramis died due to an infection which occurred due to Cytoxan, an autoimmune suppressant" it disappeared, I couldn't find it anywhere, keep in mind I received the news from Variety on-line before UPI and spent the next several hours trying to find this article, in order to add to my research; it's gone, disappeared, erased. We need to keep in mind that Big Pharma has incalculable power, all over the world; they control more money than all the global Automotive Industry. So making a drug that brings them billions of dollars a year look like a "villain" is not in their best interest.
So what do we do? We go to the source: Primaryimmune.org Please go to their site Primaryimmune.org (Immune Deficiency Foundation) then click on Learn About Primary Immunodeficiencies then click Treatment and you will find "Stem Cell and Gene Therapy!! They are in Maryland (where are you located?) Plus we need to contact the Harold Ramis family; he is survived by his wife, Erica Ramis; sons Julian and Daniel; daughter, Violet, and two grandchildren.
So where do you want to begin?!
BTW - how do I post the China Trial, globally, on the site?
From one suffering friend to another,
Liza
Thank you for offering your extra feelings in msg too. Warmer weather sounds so nice around here before Memorial Day. All I can add is what someone told me, stay away from gluten, white projects, and overextending myself so they can all have a better childhood. He really don’t even know what happened. I don’t know if this is all 100%. Yet, I hope those around me feel good today. Thank you, Kim xoxo
Hi Liza,
To post a discussion, you hit the tab at the top 'discussions', then on the top right you hit the 'add' tab. When complete hit the 'save'. I'll pick it up from there and sent to to all members via e-mail.
You know I caught Bill Murray on the Graham Norton show. I'm an American who enjoys the BBC, and he mentioned him, but never mentioned how he died. You are the first to tell me WHY he died. What a shame!
I'm located about 70 miles west of Baltimore/Washington DC, but just have a terrible time riding in the car, so traveling there is OUT! I'm guessing this is located in the Bethesda area, but I'll have a look. I think the Sjogren's Foundation is there.
I'll let you post this as a discussion as it was your fabulous find! Let me know if you need more help.
Wishing you well,
SK
Nope, they're in Towson, MD.
Here is some info on Advocacy
http://primaryimmune.org/idf-advocacy-center/
this will take some time to go through.