Urgent Request For Volunteers To Fly To Washington Dc

[barbara]

Urgent Request For Volunteers To Fly To Washington DC

Dr. Centeno has asked for our help. Please see his message below:

A non-profit I'm working with as a scientific advisor met with Senator Harkin yesterday in DC. I flew out there and we made some progress. They are trying to get the regulatory framework clarified and changed when it comes to a-ASC use. They would like 2-3 terminally ill patients who have not had stem cell treatment (perhaps can't afford) to fly with them to meet with Senator Harkin for the next visit. Dr. Centeno


This message is from me:
If you would be able to make this trip and you do have a terminal illness, please contact me immediately via private message or e-mail. This trip will take place in the next month so time is of the essence. Your flight will be paid for by the non profit agency. It is preferred that you live in Iowa or a nearby state, but that is not mandatory. This trip is for someone who feels that there is no hope unless they can get stem cell treatment. You can send me a message by clicking on Members List, then click on B then Barbara (just the plain one). On the right hand side is where you can either private message me or e-mail me. E-mail is probably simpler. This is a huge opportunity to move forward on our ultimate goal. Please, if you qualify, step up to the plate. Barbara

 

[Cynthia]

Washington DC

Barbara- I don't qualify per se. But, since I live in NJ I could drive down to DC if needed for any kind of support or lobby effort. Please do not hesitate to ask me & keep me in mind for any needs.

 

[barbara]

Cynthia - Thank you for stepping up to the plate. I have copied your post and sent it to Dr. Centeno. Two patients have responded that do fit the criteria, one lives in Iowa even. Your offer is very generous as well. I believe that Dr. Centeno would like to have 3 people committed to go, but I do not know how critical it is to fit most of the criteria. I am sure I will hear from him soon and then will provide details so everyone will know what is going on with this meeting.

 

[Cynthia]

Just let me know

I would also go to offer my experience and view as a caregiver. For the past 7 years I took care of my Mom who had a stroke leaving her wheelchair bound. She had unoperable blocked coronary arteries, PH, PAD and Diabetes. She was sent to Thomas Jefferson Hospital in Phil for vascular surgery on her legs.Otherwise she was an alert wonderful woman. She got Hospital Acq Pneum. and they couldn't do much for her after that. Which I found to be unbelievable. Mean while they are doing Stem Cell therapy at Temple a mile away. But the doctors didn't think ( only because they didn't know) that it would help. So I have seen and dealt with terminal illness. Which didn't have to be terminal. There is a caretakers side to all of this too.

 

[barbara]

Being a caretaker is no simple task. One of the people I correspond with on a regular basis has a wife with Parkinson's Disease. He loves her dearly, but just feeding her takes him 3 hours. I know many times I just wish my own husband would not have to do all the things that he does that I cannot do any more. It's tough on everyone. I do have to mention once again for those that may not know, I also have a disease called NoVac besides COPD. This came on quite a few years ago when I noticed it was all but impossible for me to vacuum. Since I felt vacuuming was life threatening for me, I had to give it up for good which was oh so upsetting. Evidently, it is very contagious as my husband caught NoVac from me almost immediately. That's one thing he refuses to do! Thank heavens I have a nice neighbor who seems to be immune to it. I know it's not curable. All the stem cell treatments in the world will never cure NoVac for me.