GRACE :: Global Resource for Advancing Cancer Education

The Case For GRACE

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The Case for Grace

What is the Global Resource for Advancing Cancer Education (GRACE)?

GRACE is a nonprofit organization that we developed out of a commitment to improve the care that cancer patients receive by teaching patients and their families about their cancer and the best treatments. We can conquer the fear of the unknown by providing expert answers to questions directly from cancer patients and their families. Even with good oncology training, a general cancer physician can’t be an expert in every type of cancer. We don’t intend to replace your doctors – instead, we are experts in our own specialized corner of oncology, and we spend much of our lives on a narrow focus of a particular cancer. Now you and everyone who needs it can have free access to the latest information from experts on a particular cancer or aspect of oncology care. In addition to information about different types of cancer, we’ll provide expertise on topics that cut across cancer types, like radiation oncology, oncology social work, and complementary medicine.

While there is other information on the internet, this isn’t a static site with vague recommendations written by committee. We haven’t found there to be any other source for constantly updated, interactive, and expert-mediated discussion of the details of cancer management.

What will you find here?

Helpful information is available in many forms. For each topic here, there is a site for recent posts that is regularly updated by the faculty, along with archives of prior posts arranged by date and subject. Members can also post comments and questions after each post. In the forum section for each topic, members can leave questions or comments that will be addressed by the faculty and potentially other members here. Each topic also includes subject specific list of Other Resources and Audio-Visual Content (developed as funding permits).

All of this information is searchable, allowing you to find information you require whenever you need it.

In addition, our site includes a chat room function, for which there are scheduled Q&A Events, or members can use it for communicating in real time.

We are starting from a core expertise in lung cancer, with additional information about the basics of cancer for the general public, oncology social work, and radiation oncology. We plan to broaden our educational offerings to other cancer topics as our support allows.

We also hope to add more features over time, as technology and financial support allows. We want to grow in order to continue to accommodate the needs of the cancer community. If you have an idea, please contact us.

Who provides the information?

GRACE provides cancer information from a limited and hand-selected core group of experts in their field who can provide balanced information based on the available clinical evidence. They are the Faculty of Appointed Clinical Experts, or the FACE of GRACE. We provide basic biographical information on their training and qualifications so you can know the source of our recommendations. Whenever possible, we’ll support our interpretation based on the evidence from clinical trials, but we will also provide judgment and balanced commentary. The recommendations are the opinions of one expert, and you may agree or disagree, just as the experts don’t always agree. But we will always strive to be balanced and credible: if you can’t trust our recommendations, we have failed.

We welcome questions, comments, and objections. Much of the information here is also provided on an ongoing basis by other members, based on your own experiences and discoveries.

Why register as a member?

You don’t win prizes, or even learn a secret handshake by becoming a member. In fact, you can access most of the information on the website without registering. But members can sign up for live teaching events as they are offered, and only members can leave posts or receive e-mail notifications of new materials. This is a community, enriched by group participation. At its best, members learn about each other and from each other. We have also found that they come to care about each other. This isn’t a static, anonymous book. It’s a growing, dynamic place populated by real people you can come to know. And everyone has something useful to contribute.

How is GRACE supported?

Oh, yeah — we thought you’d never ask. When we say “everyone has something useful to contribute”, we weren’t just talking about your questions and insights. GRACE is a nonprofit that depends on support from grateful users. We seek charitable grants from foundations and corporate sponsors, but we need your help. All of the following can be added as funding permits:

  • new formats for educational programs (audio programs, online lectures, case-based panel discussions)
  • additional expert faculty
  • novel programs (live conferences, CD-ROM lecture materials, and more)

The Global Resource for Advancing Cancer Education (GRACE) is a nonprofit organization that has been granted tax-exempt status from the IRS under section 501(c)(3) of the US tax code. Donations are tax deductible according to current tax law for 501(c)(3) organizations. Our Tax ID is 56-2676328.

We will do everything we can to create the best educational resource on cancer for the general public. Your contribution will increase our offerings and help more people. Please support the cause.


7 Responses to The Case For GRACE

  • dusty says:

    I just want to let you know that I’ve read your postings and I very much appreciate your research on behalf of BAC patients. Keep up the great work!

    Dusty Donaldson
    Diagnosed 9/2006 Stage 1B BAC
    High Point, NC
    dusty.donaldson@mba.wfu.edu

  • Jolene says:

    Thank You for posting on our Lung Cancer Site. Having someone who cares with your credentials, has been a boost to all of us who are fighting lung cancer, are or have cared for someone with this disease. My dad was Dx Feb 26/06 with NSCLC BAC and he past Sept 14/06.
    As a nurse I am still stunned. There are so many questions that were not answered and as a family we are still confused. While some may have thought we were a family in denial, we were a family who were being told two different versions of what was happening to him. His oncologist, to the very end, said, “There may be some cancer cells there”
    while the Pulmonolgist said
    he is dying from BAC. When I saw his CT scan I was horrified. Total white out
    on the right lung field. In 23 yrs as a nurse, I have never been so confused about anything more than this. It was suppose to be such a small area, that they said they got with 7 weeks of radiation, only to have him
    be terminal one week after he completed his sessions.
    Can you help us to understand what went so terribly wrong? Dad had copious amounts of frothy, white foam, nothing like I have ever seen or hope to ever see again, constantly
    roll from his mouth 24/7. His oxygen levels were horrific. I don’t know if his lungs failed because of high levels of Prednisone after his radiation, to high levels of oxygen 10 liters
    to maintain his sats or what. We need peace. We need someone to look at things and say, this is what I think happened with his lungs. He was 81, look 70, physically was in excellent health his entire life, was active, ate great, did the treadmill without fail daily, etc. It is shocking to think that he had no lung volume…none. Please, if you can help answer my questions, let me know.
    Note: He hemorrhaged during his Bronchoscopy
    He was Dx at this time with
    :end stage Emphasema, yet, this is someone who exercised regulary and never was short of breath until he got Pneumonia in Jan. 06.
    He was told at the time he had 1 Liter of Lung Volume after his Pulmonary Function Test and after his Bronch wa
    on 02 3-5 liters constantly.
    His PET/MRI were negative for mets. We were told there might possibly be one
    lymph node light up, but, that wasn’t even clear.
    We were told this was slow growing and he could have three to five yrs. One oncologist suggested radiatin and chemo. We sent him to a Lung Cancer Treatment Center for a 2nd opinion and they said with his age, low lung volume and etc. Tarceva is what they would advise. He took the gamble and went with the radiation. He had absolutely no air. It was the most horrible thing to watch and I just need help to understand what went wrong. His left lung looked totally black on the CT scan. How can it look so good and he have only one liter of lung volume and no air, even on oxygen? Why couldn’t the left lung carry him if it didn’t have emphysema? We need someone who can look at things and help us to put closure to this. Dad was such a wonderful person and a devoted husband and father that it has crushed us to know he went through virtual hell and we aren’t sure what exactly went wrong so fast.
    I have read your other posts and we are so happy you are online with us. Respectfully, jolene
    jolenehinrichs@hotmail.com

  • Jolene says:

    Thank You for posting on our Lung Cancer Site. Having someone who cares with your credentials, has been a boost to all of us who are fighting lung cancer, are or have cared for someone with this disease. My dad was Dx Feb 26/06 with NSCLC BAC and he past Sept 14/06.
    As a nurse I am still stunned. There are so many questions that were not answered and as a family we are still confused. While some may have thought we were a family in denial, we were a family who were being told two different versions of what was happening to him. His oncologist, to the very end, said, “There may be some cancer cells there”
    while the Pulmonolgist said
    he is dying from BAC. When I saw his CT scan I was horrified. Total white out
    on the right lung field. In 23 yrs as a nurse, I have never been so confused about anything more than this. It was suppose to be such a small area, that they said they got with 7 weeks of radiation, only to have him
    be terminal one week after he completed his sessions.
    Can you help us to understand what went so terribly wrong? Dad had copious amounts of frothy, white foam, nothing like I have ever seen or hope to ever see again, constantly
    roll from his mouth 24/7. His oxygen levels were horrific. I don’t know if his lungs failed because of high levels of Prednisone after his radiation, to high levels of oxygen 10 liters
    to maintain his sats or what. We need peace. We need someone to look at things and say, this is what I think happened with his lungs. He was 81, look 70, physically was in excellent health his entire life, was active, ate great, did the treadmill without fail daily, etc. It is shocking to think that he had no lung volume…none. Please, if you can help answer my questions, let me know.
    Note: He hemorrhaged during his Bronchoscopy
    He was Dx at this time with
    :end stage Emphasema, yet, this is someone who exercised regulary and never was short of breath until he got Pneumonia in Jan. 06.
    He was told at the time he had 1 Liter of Lung Volume after his Pulmonary Function Test and after his Bronch wa
    on 02 3-5 liters constantly.
    His PET/MRI were negative for mets. We were told there might possibly be one
    lymph node light up, but, that wasn’t even clear.
    We were told this was slow growing and he could have three to five yrs. One oncologist suggested radiatin and chemo. We sent him to a Lung Cancer Treatment Center for a 2nd opinion and they said with his age, low lung volume and etc. Tarceva is what they would advise. He took the gamble and went with the radiation. He had absolutely no air. It was the most horrible thing to watch and I just need help to understand what went wrong. His left lung looked totally black on the CT scan. How can it look so good and he have only one liter of lung volume and no air, even on oxygen? Why couldn’t the left lung carry him if it didn’t have emphysema? We need someone who can look at things and help us to put closure to this. Dad was such a wonderful person and a devoted husband and father that it has crushed us to know he went through virtual hell and we aren’t sure what exactly went wrong so fast.
    I have read your other posts and we are so happy you are online with us. Respectfully, jolene
    jolenehinrichs@hotmail.com

  • Jolene says:

    Dr. West
    I apologize for such a long post. I just got home from a long shift and my post demonstrates that I obviously have OCD where my dad is concerned. Sorry. Jolene

  • Jolene says:

    Dr. West
    I apologize for such a long post. I just got home from a long shift and my post demonstrates that I obviously have OCD where my dad is concerned. Sorry. Jolene

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