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Wednesday, October 30, 2013


Congratulations to Relay For Life of Second Life  for FINALLY fixing the global information and removing the misleading the information that had been out there.  Actually, the global page on the American Cancer Society has been updated and so has the new site for Relay For Life of Second Life.  The pages look very good and does make international re-layers much more informed about where their money is actually going. 

Please keep in mind that everything I am sharing with you is out there, it just takes a bit of research to find it all.  I try hard to not make you have to do that research and give you as much information as I can without making you read a million things.  But in the information, I have included, if you are reading this in the blog or email, I have tried to highlight the parts that Convio would fall under.  If you are reading this in a notecard where I am unable to highlight this I apologize.

Sting also included the privacy policy on the website which is wonderful.   They also sent out the privacy policy to many along with links to the global, and the stewardship report.  For an organization that does not share information, why would he need to include an opt out link, if there is nothing to opt of. Chuckles, he neglected to send it to me......hmmmm kind of obvious.  After all I ask the hard, blunt questions that they are not crazy about answering, but this time had no choice. 

Great job in putting those pages together in less than 48 hours.

I do have a question about the privacy policy still and I suppose will not be able to truly answer it until the Convio is back up and running for Relay For Life of Second Life.  Here is the question that I have tried to see for myself. 

Yesterday I went through the American Cancer Society site and made a $5.00 donation to see if it was convio....Convio is actually the name of the software program.  Many nonprofit organizations use this software.


  It did not give me the opportunity to opt out.  But to also ensure that I was using the actual the Convio stuff I went to the Relay For Life site and popped in my own name.....chuckles there are many J____ M____'s out there.  One is on a team in the states in Indiana.  I found her and went to make a donation.  NOW that was the exact same convio as we give RFL of SL..  Today, I did go to the RFL of SL page and had the opportunity to donate to the SL event.  I went to the same convio page that I received when I went to to the relayer in rl's page.  Again, looked at the page scrolled down to Privacy policy and once again went through all three pages to get to the information that I am sharing with you here.    Again no place to opt out, but if you go to the bottom of the page where it says Privacy....and click there, then click internet privacy policies then click internet privacy policy.  Kind of chuckles at the number of steps one must go through to even access it.

This is copied and pasted from:

Internet Privacy Policy
Our Commitment to Privacy

The American Cancer Society (“ACS”) respects the privacy of every individual who visits (“Web site”). This notice explains our online information practices. Because your privacy is important to us, we provide you with notice and choices about the collection and use of your information. To make this notice easy to find, links are provided at the bottom of our homepage and on every page within our Web site. Additionally, each page that requests personally identifiable information reminds you of the importance of your privacy and provides a link to the privacy policy. By visiting ACS at, you accept the practices described in this Privacy Notice. You may click on any underlined word to receive a more in-depth explanation of the term.
Use of Cookies

We use cookies, small files that are sent to your Web browser and stored on your computer's hard drive, to improve your Web site experience. The cookie is used to speed up your access to the Web site and the information you wish to see, but it does not contain any personal information. The majority of Web browsers accept cookies, but the “help” menu on your browser should give you options for preventing, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some Web site functionality may be lost.
Data Collection

We collect two types of information:

    Standard Web server traffic pattern information. General traffic, site usage, browser information and length of stay information is collected and stored in log files. This type of information is shared externally only on an aggregated basis.
    Personal information. We do not collect personally identifiable information from you unless you provide it to us voluntarily and knowingly. If you personalize a Web site, volunteer, order a book, request information, or donate, for example, we may collect the following information: first and last name, street address, city, state, zip code, telephone number, email address, and subject of inquiry.
    Personal information may be needed for certain optional online activities:

    Registration: If you choose to customize the Web site to your needs by becoming a registered Web user, we retain the preferences you select so that you will not have to reenter the information each time you access our Web site. These preferences may include requests for email, news, information on specific cancer types, language preferences, and interest group selections (patient, medical professional, volunteer). You can access your profile by entering your user name and password each time you use the Web site. You are not required, however, to enter your name or mailing address.

    If you register to participate in an ACS event, such as Relay For Life or Making Strides Against Breast Cancer, using our event registration site, we may ask you if you are a cancer survivor. This information is useful for event purposes. Further, if you elect to use our referral service to inform a friend about the event registration site, we will ask you for your friend’s name and address. We will store this information in order to send your friend a one-time email inviting him or her to visit the site.

    Book orders: If you choose to order a book, we collect standard credit card information (card number, card type, expiration date) and keep a record of your financial transaction. Credit card numbers are held only until the charge can be processed (usually several minutes), then the number is only available to Customer Service for purposes of problem resolution.

    Contributions: If you choose to donate to our organization, we maintain a record of your contribution. Your financial information will be treated as described above in “Book orders.”

    Requests: If you submit an online request for ACS products such as free brochures, or submit a question through a “contact us” query, we may have to gather additional information from you to respond to your request. Such information will vary with the request but often includes name, shipping address, telephone number, and email address.

    Public Forums: If you choose to participate in a chat room, discussion board, news group or another public forum that we make available to our users, please remember that any information that you disclose in these areas becomes public information. You should exercise caution when deciding whether or not to disclose your personal information.

    Letter to Congress: If you choose to generate an email to your Congressional representative on our site, we receive a blind copy of the email. We may use your letter or information from your letter to further educate Members of Congress about our cancer advocacy priorities.

Data Use

We limit the use of information provided to us on our Web site to the following:
Internal Use

    If you do not make a service request, donation, purchase, or otherwise identify yourself, we will have no personally identifiable information about you. We will only use aggregate information derived, in part, from your use of our site to improve our site and our service to you.

  If you provide personal information, we may enter your name into our constituent database and contact you in order to:
        Complete voluntary surveys seeking feedback for quality and service improvement purposes.
        Supply you with information including cancer related health news, ACS programs, events and services.
        Request voluntary time or monetary contributions to ACS.
        Request your participation in an ACS research study.

    We collect the email addresses of those who communicate with us by email. Inquiries may be forwarded to the appropriate ACS department for response and may be entered into our constituent database. If your name is entered into the database, we may contact you (see (2) above).

External Use

Your health-related information is privileged and confidential and will not be shared or released to any organization or business entity other than those affiliated with or working in conjunction with ACS as follows:

    We use third parties to provide you with the following services:
        Cancer Profiler: Disclosure of personal information is optional when using the cancer profiler. Additional services offered by NexCura are covered by their privacy policy and may require payment and disclosure.
        Clinical Trials: If you are considering clinical trial participation and would like to use the American Cancer Society Clinical Trials Matching Service, you must register with and complete a screening questionnaire. This service is offered through a partnership between the American Cancer Society and the Coalition of Cancer Cooperative Groups. As part of the matching process, the Society and the Coalition will share your information with each other. If requested, the Society will then contact you to discuss the details or provide further information.
    We occasionally make our constituent names and postal addresses available to other reputable non-profit organizations. We have found this to be the most cost-effective method of increasing our database of potential constituents and hope that you value the information they send you. Your name is only available to these carefully screened organizations for a limited time and it is de-identified, such that it is not associated with the American Cancer Society. Other organizations will not have continued access to your name and address unless you choose to respond to their initial mailing. We do not share email addresses or health related data. Information gathered as part of Cancer Profiler or Clinical Trials (above) is not shared.
    We occasionally hire other companies to provide limited services on our behalf. We will only provide those companies the information they need to deliver the service and prohibit them from using that information for any other purpose.
    We have relationships with companies that conduct charitable sales promotions and commercial coventures that support us in our mission and activities. If you provide us with your mailing address, we may pass your contact information to these companies so that they may ask you if you are interested in receiving their services. Your choice to use their services will benefit us; the amount of money we receive from these entities as a result of your participation is disclosed at the time you are contacted about the service. You are under no obligation to respond and the companies are restricted from using your contact information for any other purpose. Information gathered as part of Cancer Profiler or Clinical Trials (above) is not shared.

Your Options

We respect your privacy and allow you to restrict internal and external sharing of your personal information. We recognize that you may wish to limit the ways in which we contact you and we offer the following options:

    Do not contact me by telephone.
    Do not contact me by postal mail.
    Do not contact me by email.
    Do not share my contact information with other non-profit organizations.
    Do not contact me with fundraising requests supporting the American Cancer Society.
    Limit your fundraising appeals to semiannual solicitations only.
    Do not contact me or share my information with anyone.

For more information on how to inform us of any desired restrictions, please click on the following link: opt out. If you contact us with an opt-out request, all reasonable efforts will be taken to ensure that you will not receive any of the selected communications from us in the future. If you do not wish to opt out at this time, you may do so at a later date should you so desire.

If you opt back into a specific service, you will receive communication in that manner, regardless of your overall opt out selections. These services may include newsletter subscriptions or email communication by asking a question using “Contact Us.”

Upon request, we will provide you with the information we maintain about you so that you may request corrections. This information will be sent via postal mail, which we believe is the most secure method of communication. Please contact us by email at or in writing at:

Security and Privacy Requests
The American Cancer Society National Cancer Information Center
11701 Stonehollow Dr
Austin, TX 78758

To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.
Data Security

We are committed to protecting the security of your personal information and to honoring your choices for its intended use. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we strive to maintain physical, electronic, and administrative safeguards.

We process your financial transactions securely using the Payment Card Industry Data Security Standard ("PCI DSS") (the credit card industry's most stringent security standard). Examples of our security measures include: physical, electronic, and procedural safeguards; sophisticated security monitoring tools; documented security policies; use of strong encryption (e.g., SSL) for transmissions of Order Information to and from our credit card processor; restricted access of personally identifiable information; and, periodic security audits.

Inside ACS, data is stored in password-controlled servers. Our staff and volunteers are educated about the importance of safeguarding your information and we are committed to holding them accountable for protecting your confidentiality. However, such precautions do not guarantee that our Web site is invulnerable to all security breaks. ACS makes no warranty, guarantee, or representation that the use of our Web site is protected from viruses, security threats, or other vulnerabilities and that your information will always be secure.

Whenever ACS permits an external third party to access personally-identifiable information, appropriate procedures are followed to help ensure that the information is used only for authorized purposes and by authorized persons in a manner consistent with the choices ACS constituents have made under this statement, and that the security, integrity and privacy of the information is maintained. While ACS will employ procedures to help ensure that your information is only used for authorized purposes as described above, we cannot make any guarantees with respect to the actions or policies of such third parties.
Links Within Our Web Site
Internal Links

Because of the various programs and services at ACS, there are several privacy notices to inform our constituents of policies specific to the activity in which they are participating. Please click on any one of the following links to learn more:

    Cancer Survivors Network
    Continuing Medical Education: Online Database

External Links

Our privacy policies apply only to your use of the ACS Web site. This site contains links to other sites, including sites that have a special relationship with us. We do not disclose personably identifiable information to those operating linked sites and we are not responsible for their privacy practices. Links to other sites do not imply an endorsement of the materials or policies on those Web sites. You should read the privacy policies of each site you visit to determine what information that site may be collecting about you.
Contact Us

This privacy statement will be updated periodically and posted on our Web site. It applies only to our on-line practices and does not encompass other areas of the organization. Please click on one of the links provided under Internal Links to read other ACS privacy statements. It applies to the on-line practices of ACS and its chartered Divisions located throughout the country. References to "American Cancer Society", "ACS", "we", "us" and "our" are references to American Cancer Society, Inc. and its affiliates, staff and volunteers. We reserve the right to change this policy at any time by posting revisions. You agree to review the Privacy Policies each time you use our Web site so that you are aware of any modifications. By accessing or using the Web site, you agree to be bound by all of the terms and conditions of the ACS Privacy Policy as posted at the time of your access or use. If you have any questions about our policy or our compliance, you may send us an email at or write to:

Security and Privacy Requests
The American Cancer Society National Cancer Information Center
11701 Stonehollow Dr
Austin, TX 78758
Policy Updates

We reserve the right to update this policy at any time. If a material change is made to the policy, we will email all registered users at the email address provided at time of registration.

Back to me--

Ultimately, no matter which I go, I run into the same privacy policy as above.  So I have to wonder what is man's word or a site of a major organization that states the opposite.  Please in no way shape or form am I encouraging anyone to stop relaying.....I just believe in my heart well that and  over 20 years experience in non-profits and being extremely well versed in transparency and accountability) that each of us has the right to be well informed and if it takes me hitting all the different kinds of social media for Stingray and the chairs to make it so (since when I asked privately, things were never fixed) then so be it.  Someone has to be the bad guy to bring out the truth and keep things as transparent as possible.  So like me or hate me for this, it does not really matter, what does matter is that you are better informed because of it.

Monday, October 28, 2013


WOW in response to yesterday's email, blogs, and inworld mailboxes as well as this page, I am happy to say that RFL of SL FINALLY fixed the misleading statement of 12-15% of all monies to international. There is a part of me that has to laugh about it. Considering it was brought to both to ACS and RFL Of SL's attention all the way back in May. It only took until someone had the guts to go loud and public with it before they fixed it! It is things like this that have soured me so much on RFL of SL and ACS.......the non transparency of things.

Sunday, October 27, 2013


It is with great regret that I need to apologize to each of you.

Personally I believe that the Committee at the top of Relay For Life of SL has the responsibility of ensuring that this is known and transparent to all of its volunteers.  Since they did not do this, it was my responsiblity as a captain to ensure that I make it known and transparent to each of you..

I have been aware of one of these issues since May when Stingray9798 Raymaker had emailed me and told me that he would correct the RFL information that is given out.  As of today it is still not corrected and many of our international relayers and captains believe it to be true.  We do not give 12-15% of all monies brought in to the international community.  Now they are doing things on a global basis to educate people ...last I checked --currently focusing on teaching the dangers of smoking in Africa.  Though I was told in a documented email that this would be changed back in May 2013, written by our own Stingray9798 Raymaker and approved by the ACS Global Director...though the information for 2014 has been put in and updated, as of today here is the link

The misleading numbers are still there.  Those same numbers were put into all the different languages that were given out to international relayers.  In truth, when I spoke with the ACS directly and also thru live chat (also have the documentation) I was told in no uncertain terms that all monies raised stay in the US.  This does not mean that our international relayers should stop does mean that they have the right to know through full transparency and accountability where their money is going.

The other thing I realized, and I hold myself responsible as your captain, for not being more adamant about furthering my research into the transparency and accountability of the American Cancer Society and even more so, our own business liaison and leadership as I realized they should have had better knowledge and/or been more forthcoming with information.

Today I received a holiday gift catalog in the mail.  Not thinking too much about it as the holidays will be here before we know it.....I glanced through it....realized that it was for a non profit organization called Heifer International.  I had never heard of it before, nor was it a gift as in wrap it up type catalog; but rather a catalog asking for sponsorships of animals etc to be given to families in various third world countries.  Another, I am sure good cause, but still one that I never heard of. I called their number as it gives a PO Box in Arkansas.  When I spoke with someone, they told me they were in Canada.  I asked how they got my name, the response was a chuckle and "that is the most asked question we get".  He then went on to explain that I may have donated to another non-profit organization.  I knew I had only donated to one.  I asked him if he had heard of the American Cancer Society, of which he replied no....but did offer to remove me from their mailing list.  This prompted a call to the American Cancer Society, the call center person was not as familiar with the privacy policies, so while they were inquiring I searched their site.  I found that if you scroll all the way to the bottom and click on the small print that says Privacy it opens....then click on Internet privacy ---then on the 3rd page you have opened you can click on Internet privacy policy (so it is kind of buried)  and there it is.  but to save you the time and trouble during your busy days of having to search for is the direct link:

It clearly states that they share your mailing information which is something that we all put in when we donate thru convio.  I find this rather ironic in a virtual world that places such emphasis on anonymity.  I knew right away this is where my information came from, due to living on a fixed income, I choose what I donate and to who and that is my limit.  The only thing I have given personal information in for the past couple of years through their website is the American Cancer Society.  I also opted out of anything else it would ask of me when I put the donations through.  so needless to say I was very surprised when I looked into it a bit more.

I hold myself responsible for not being more efficient about learning about this before I led a team.  It was my responsibility as a leader ensure that I was fully aware of all of this and passed it on to each of you, as I did last year when I learned that YOU CAN GET RECEIPTS FOR LINDENS DONATED.  True the process is long and Stingray is not always too good about handling things in a timely manner.....but the fact of the matter is that you can get them.

Many of you know that I have been diagnosed with cancer since the end of the 2013 season, and though I had always though the ACS site was very informative, it was only when I went to look up the type of cancer that I have been diagnosed with that I soon realized the facts are not there, as much as just generic/general information is.  I found the answers I was looking for through a bit more reliable sources....Mayo/ Northwestern/ solid teaching universities that are in the top rankings in this country.  Their information is much more accurate and specific. 

In trying to give the American Cancer Society some credit as a patient, as I truly had questions and concerns, Once again I have been very disappointed.  Both with the promise to send me information for other links and the ability to offer assistance. 

As a team captain for RFL of SL -- I am stepping down as I will never give another penny to the ACS.  In no way shape or form, am I saying that each of you should not support them, that is based upon your feelings toward it.  I will just no longer continue to take this team down that path, and if you believe so much in them, you should truly look into joining another team next year.  I commend you with all my heart for following your heart.  As a team captain of an amazing team of people, I have researched it and when ready to, hope you will all continue to support me in fundraising efforts for STAND UP 2 CANCER.  100%---yes 100% of each donation made goes toward the funding of research on cancer and nothing is hidden away.  Here is their website if you care to take a look.....oh and by the way, they also have an international team working on research.

Again I apologize for not being so straightforward with you from the beginning, and not delving into this deeper.  As a leader it is my responsibility to have all the facts to pass on to each of you.

I love each and every one of you so very much.