I filled out the form and was a little perplexed that receipt is not acknowledged - you're redirected to a page that talks about what's going on in the White House.
Nonetheless, here is what I wrote:
My son, Chance Gilford, age 38 with a 14 year old daughter, was diagnosed with Glioblastoma Multiforme Grade 4 on 12-1-14. Thankfully, he is alive, being treated at UCSF, and residing in California but the deficits are heart-wrenching: loss of quality time with family and friends, loss of words, memory and vision, loss of job, home, ability to drive. Conventional medicine leaves so much to be desired. We are constantly researching to find alternatives that may work better. Fortunately, Chance remains strong in his resolve to see himself healed and whole. I constantly pray for a solution for Chance. I pray for a solution for every person, family affected by the many diseases called cancer. I give thanks and pray for you, Mr. Vice President, to accelerate efforts toward a cure.
Thanks for providing the link and I too filled out the form. Maybe we should all provide our stories so they can be compiled and re-sent as a group to the VP's office.
So here is what I provided:
Dear Vice President Biden,
Here is my cancer story. So far it is a positive story but I live with the fear that at anytime it can turn negative.
I was diagnosed with a grade 4 GBM brain tumor June 2015. After a successful resection of the tumor, 32 days of Radiation and chemotherapy, and now monthly (4 out of 12) chemotherapy treatment, I am leading an as normal life as possible.
Since my resection, my wife and I have been on a step learning curve about cancer, medical treatments, drug trials and patient advocacy. As with any major medical diagnoses, there has been significant impact to my family and myself, thru operations, daily radiation treatments, chemo drugs, diet changes and lifestyle changes.
Our frustration is the disregard for proven drugs and cocktails of drugs by doctors because it goes against the normal procedures and the lack of support of the pharmaceutical industry to research these cocktail combinations because these is no profit in using older drugs. You have to do your own research and advocate with your doctors to prescribe off-label drugs which have demonstrated success.
A review of the clinical trial process is greatly needed and I hope this is one of the area's you and your team looks into improving.
Excellent idea, Marc. I am happy to monitor and submit these stories. I also will submit the idea to whitehouse.gov that they acknowledge receipt of the submissions.
Yes, I thought it was clear that it wasn't written by me!! I just shared it, as I think it should be viewed by as many people as possible. I hope Logan doesn't mind
I filled out the form and was a little perplexed that receipt is not acknowledged - you're redirected to a page that talks about what's going on in the White House.
ReplyDeleteNonetheless, here is what I wrote:
My son, Chance Gilford, age 38 with a 14 year old daughter, was diagnosed with Glioblastoma Multiforme Grade 4 on 12-1-14. Thankfully, he is alive, being treated at UCSF, and residing in California but the deficits are heart-wrenching: loss of quality time with family and friends, loss of words, memory and vision, loss of job, home, ability to drive. Conventional medicine leaves so much to be desired. We are constantly researching to find alternatives that may work better. Fortunately, Chance remains strong in his resolve to see himself healed and whole. I constantly pray for a solution for Chance. I pray for a solution for every person, family affected by the many diseases called cancer. I give thanks and pray for you, Mr. Vice President, to accelerate efforts toward a cure.
Thanks for providing the link and I too filled out the form. Maybe we should all provide our stories so they can be compiled and re-sent as a group to the VP's office.
ReplyDeleteSo here is what I provided:
Dear Vice President Biden,
Here is my cancer story. So far it is a positive story but I live with the fear that at anytime it can turn negative.
I was diagnosed with a grade 4 GBM brain tumor June 2015. After a successful resection of the tumor, 32 days of Radiation and chemotherapy, and now monthly (4 out of 12) chemotherapy treatment, I am leading an as normal life as possible.
Since my resection, my wife and I have been on a step learning curve about cancer, medical treatments, drug trials and patient advocacy. As with any major medical diagnoses, there has been significant impact to my family and myself, thru operations, daily radiation treatments, chemo drugs, diet changes and lifestyle changes.
Our frustration is the disregard for proven drugs and cocktails of drugs by doctors because it goes against the normal procedures and the lack of support of the pharmaceutical industry to research these cocktail combinations because these is no profit in using older drugs. You have to do your own research and advocate with your doctors to prescribe off-label drugs which have demonstrated success.
A review of the clinical trial process is greatly needed and I hope this is one of the area's you and your team looks into improving.
Good Luck,
Marc Hrossowyc
Excellent idea, Marc. I am happy to monitor and submit these stories. I also will submit the idea to whitehouse.gov that they acknowledge receipt of the submissions.
DeleteA letter to vicepresident that perfectly describes present problems with outdated FDA rules:
ReplyDeletehttp://loganlo.com/2016/01/a-letter-to-joe-biden.html
Speechless. Tears streaming. Thank you for sharing this, Matjaz.
DeleteLets just hope that it gets into the right hands (Vice president, FDA people,...)
DeleteThe letter Matjaz linked to was actually written by Logan (who also visits this blog).
DeleteYes, I thought it was clear that it wasn't written by me!! I just shared it, as I think it should be viewed by as many people as possible. I hope Logan doesn't mind
DeleteHello all - in fact, I'm thrilled that you shared it. A copy was sent by my amazing congresswoman to VP Biden so I hope he does see it.
DeleteWe deserve a shot at a real cure for GBMs.
Thanks to Stephen for this amazing blog and AstrocytomaOptions. I don't know where I'd be without him and these pages.
That is so powerful. There is no moonshot in the UK but the issue is exactly the same and I will share this with as many people as I can.
ReplyDelete