Issue with the National Alopecia Areata Foundation Board

Several months ago a woman with alopecia called and ordered a number of hats. She said the National Alopecia Areata Foundation (NAAF) must not know about Chemo Savvy since we weren't listed in their marketplace. She thought we should contact them as we have a lot of very nice headwear options for hair loss. So I found their site, and the marketplace and sent email asking if they would be interested in listing my business along with numerous other businesses for hair loss. They said that would be great and to send them information. So I did, and the woman in charge of NAAF marketplace called and said they would be happy to include Chemo Savvy on their site. She had gone to our web site ( and said she was impressed with our products. What they ask in return is that the merchant donates a percentage of sales that are a direct result of customers finding the business on their site. It sounded fine to me, and a good way to help support what I thought at the time was a good organization. We put together an ad "blurb", established a promotional code to track orders where the customer found us on the NAAF site so we could donate 10% of that sale and sent all the information on to NAAF. We were just waiting to see our ad show up when I got the following email: "I have spoken with the Executive Director and the Board of Directors at the National Alopecia Areata Foundation. They believe that it is not appropriate to list Chemo Savvy on the NAAF Marketplace. The reason is the potential conflict with the name. As I was reminded we spend a lot of time and energy convincing people that alopecia areata is not related to cancer. Although you have a wonderful catalog and many wonderful products, we do not feel that we can list you as a Marketplace vendor while using the name Chemo Savvy." Apparently my disease (cancer) and the main focus of my business is shameful/bad or at the very least inappropriate, while theirs (alopecia) is not shameful/good or at least appropriate - whatever that means. This was unbelievable to me, and it irritated me for awhile, but I was too busy to dwell on it. Awhile later, someone called me asked me if I knew where they could get a specific item, and I remembered seeing it on the NAAF site. So I went there to find the company and relayed the information to the caller. Then I started looking at the site, and quite a number of advertisers there have cancer and/or chemotherapy predominately on their home pages, and some didn't even mention alopecia at all. One actually said the dreaded word cancer on the NAAF site! Now I was really irritated, so I sent off an email to NAAF. I got a call a couple of days later from the same woman who I had spoke with before and who thought our products could be a real benefit for alopecia suffers. While they still thought the name Chemo Savvy was offensive (that's the word she used!) because it indicates that our products are related to cancer and it's treatment. Since I told them in my email that as a cancer survivor, I was highly insulted by their attitude, they came up with another reason why listing my business was inappropriate. Now they said the name Chemo Savvy was offensive to Indians (I just bet they checked with some Native Americans!). Unbelievable!! There is a Chemo Savvy dragon boat that participates in events to raise money for cancer research, and I haven't heard of any protests about that! NAAF lists a business called "Bald as a Bean", but for some reason they don't find that offensive to bald people. It was an alopecia sufferer who told me about this in the first place, and she wasn't offended in any way shape or form, but the board of directors at the NAAF apparently feel they should censor things for alopecia sufferers for their own good. I am happy to refer people who call me and ask if I know where they could get such-and-such that I don't carry to a number of different business listed in the NAAF marketplace. However, I only give the particular business information, and never refer them to the NAAF site because I am not going to help contribute to an organization run by hypocrytical, egotistical individuals that apparently look down their noses at people who have cancer. SHEESH!!

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"I don’t often write appreciation letters to companies but I wanted to tell you how happy I was with your products. The B004 All Around Bangs are perfect. Not only are they attractive summer wear but they are comfortable. I am surprised that when the bangs touch my forehead they are soft – it may seem a small thing but it makes a great deal of difference to me now.

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