Thank you for getting this started, Steve. Those of us with WM greatly appreciate your efforts. With this type of fundraising, supporting research in the search for a cure, I'd like to think we'll be around to be grateful decades from now!
- Joanne (southern California)

Wishing you well on your new endeavor, Steve.

Steve, I am truly grateful that you have started the initiative to find better treatment and maybe even a cure for this disease. I am a retired school teacher, mother of 3, step-mother of 2, grandmother of 8, wife, daughter and sister. I was diagnosed with WM about 5 years ago. I am blessed to be somewhat asymptomatic so far. You give me hope. God bless.
Judith Wallace
Box Springs, GA

i am 47 yrs old and was diagnosed with wadenstroms and am wondering is boston a good place to be for the best treatment of this disease? i live in san diego now but am from boston and im familiar with all the great hospitals there.also has this disease effected anyones eye sight?i found out i had this when i had double vision and could not get my focus back go to the hospital to see why and 5 or 6 cultures later the doctor comes to me and says i have bone cancer and i am immediately put in catscan and had a chunk of my hipbone tapped then spinal tap 2, fun stuff!! 6 months of chemo and here i am.is this unusual 4 a person my age to get this?my doctor says that it rarely strikes people my age and if this is so do i have a better percent of living longer than projected 5 to 10 yrs?

Dear Steve,
Just finished reading your story. Have entered my donation for research. Hopefully, mine might be the trigger in finding a cure. Was extremely interested in the research done done that produced the change in generics that caused the cancer in the first place. Hopefully, that will be the first avenue of research to produce results. I have had WM for a year and a half now. Initially, it was discovered when I went to a neurologist for pain in my feet. Yep, peripheral neuropathy. He sent me on to a hematologist who diagnosed WM. My initial readings for IgM was 7,900. It took Rituxan, Dexamethazone, and Alkeran to bring the IgM level down to 2,300, where the Dr. stopped the Dexamethazone, and Alkeran, and is continuing with the Rituxan every three months. I don't approve of removing the other meds at this high of a IgM level, but the Dr has been successful so far, so I'm abiding by his decision. Fortunately, the neuropathy has more, or less tracked the cancer, so there is very little pain left in the feet, and hands. Only some numbness, and some foot pain if I walk too much.
Here's hoping, and praying that the research you fund finds a cure soon.

Tom S.

I am in treatment at UCLA for WM. Anyone interested in starting a group of people getting together to talk about WM in the LA area? Tom, my IgM was 8100 and immediately the good doctor I just switched to ordered Plasmapheresis process which may have saved my life and now getting Rituximab, fludarabine and cyclophosphamide Feeling good. Blanche

Dear Steve
Thanks for sharing (beyond your story)
Bing Institute conducted clinical trials
with natural substencies.
I would suggest adding the plant
Moringa Oleiffera to the research list .
yours truely
Arie

Hi Guys my name is Gary Manning and heres a litle good news....My IgM was over 5900 after 6 months I'm down to 3000. Still scary high for me. I am on a trial med called Afinitor. Got sick about three years ago , lost my job could not function took em nearly three years to figure it out. I'm 49 and was in extremely good health, triathloner 14% BMI.. I was Joe athletic till I took an extremely high stress job in Buffalo, NY. I feel the daily stress and working around an airport with chemicals and fumes contributed. I had an extreme case of the flu in 2008 and never recovered. So here I am reading Steve's story. Good luck
to all . Prayers for everyone..

To Steve: Thank you for your generousity and vision. To: Gary P M.: Thank you for posting the WM info on FB. I'm privileged to be able to learn more about this disease and what all of those diagnosed are experiencing. Adding my prayers to yours.