I had some OCF activist buttons (Dental exams save lives) which I gave out to various people when I went for pre-op and in the hospital after surgery - even in the ICU after I became coherent. I gave them to all levels of personel from housekeeping staff to doctors. The anesthesiologist in pre-op asked for an additional one to give to his brother who is a smoker. One of the ICU nurses who is African-American told another person that it was very important for "our people." I was pleased to see that some of the people wore them on susequent days. The other ENT in the clinic told the resident/interrn/student group with him that he always tells his students to look at the whole patient and made a point of showing me that he was wearing it several days later.
The home health care nurse who is taking care of me is very knowledgeble about OC and both she and the physical therapist took some of the brochures to distribute.
My favorite button is "Is there a killer under your nose?"

Malka,

You are one amazing woman. Advocating for OC awareness in the ICU. That has to be a first.

We wear those buttons in our office.

I hope you are feeling better every single day.

Jerry

If anyone else has Malka's passion, and you want to take brochures and buttons to your hospitals, to give away to the staff, please contact Brittany at OCF and she will get you all that you need. Jerry's right -this is likely a first..... but what an example!!!

Thanks for what you do for on behalf of all of us!!!!

A new member was looking to join a local support group in her area. Unfortunately there wasnt one. Her screenname is Buttercup. Maybe you could share some of your ideas with her so she could start her own local group like you did.

As with most health issues many people do not get necessary routine exams and particularly avoid dental care until there is a crisis. This is so with those with means and insurance more so with lower income and indigent people.

In speaking to various people I have found that although this is a large metropolitan area with many dentists, doctors and clinics most see only a few patients with our cancer in a year or even over their career. I would assume that this is also true in smaller areas as well as in larger metropolitan areas where care is scattered among many health care facilities. My dentist who has been in practice for many decades has only encountered a few patient with oral cancer.

Many of the issues we face are the same as with other cancers. If there is no specific oral/head and neck cancer support group in your area I would recommend going to a general cancer support group until one is started. A general support group is also a good supplement to a specific one. Many hospials have support groups for cancer patient and for caregivers. Sometimes there are specific programs sponsored by medical facilities, insurance companies, public health organizations, etc. These are generally advertised in the news paper. You could also check the web sites of hospitals in your area. You do not have to be a patient at a facility to attend these events.

There are several ways to start a support group. The local representative of the American Cancer Society may be able to help. Other people to approach are your own doctors, Cancer Centers, public health units, patient representatives and patient navigators at hospitals and cancer centers.

PLUG: With OCF state chapters forming support groups should become an easier task. There are only a few state chapter volunteers so far. Anyone can participate in the state chapters and other OCF activities by contacting:
Susan Luria [email protected]
Brittany [email protected].

Malka

I tried emailing Brittany through that email and it did not go through??


Nevermind....I was adding her full name to the email address.

Business cards for all the state chapter coordinators came in today and will be mailed out tomorrow.

Malka, what an effort! Thank you for all you do.

As Brian mentioned, we are always looking for people to spread awareness. So let us know if you can help in any way.

I realy believe we can make a difference, even if it is baby steps, and make oral cancer awareness known and talked about.

As I meet more and more oc survivors, and relatives of those who passed, and hear stories of the courageous battles, it makes me more determined to be involved.

It is something I need to do for my brother, this is now his legacy, to save lives.

Let me know or Brian/Brittany if you want to help!

Brian, and all coordinators:

I seem to remember the subject of bulk emailing (newsletters and such) coming up a time or two. I found this service yesterday while bumping round the net which may be of interest, especially since it is a no cost solution for non-profits like OCF.

VerticalResponse (www.verticalresponse.com)
VerticalResponse is a reliable, sophisticated and popular online service that allows 501(c)(3) nonprofits to send up to 10,000 emails per month for free. It�s strong in deliverability�ensuring your emails go into your subscribers� inboxes rather than their Spam filters�segmentation and Web integration, and has a number of options that make it easier to integrate with constituent databases (especially Salesforce). However, the interface can be complex at times, and the built in graphic-designed templates aren�t as polished as some other tools. After the 10,000 free emails, it gets a bit expensive�if you�re sending more than 15,000 emails a month or so, compare prices to other options. While VerticalResponse has been offering their free nonprofit program for about six months now, and appears quite committed to it, this kind of philanthropy makes some of our contributors nervous�if the company�s priorities change down the road, you might need to start paying or find another service.

Kevin

Thanks Kevin, I will make sure Brian looks into this. It sounds interesting.

Have a good night!

Susan